Journal History

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Thursday, July 12, 2001 at 11:26 PM (CDT)

Thank so very, very much for your wonderful outpouring of love for our precious daughter... As I have said so many times here, it has meant the world to us to know that people all over are praying for Arielle and our family, and that even those of you who never met her were able to sense what a special, lovely little person she was...

Our time since yesterday has been full with all of the planning and arrangements for her services tomorrow. Because our hearts are so heavy, our grief so deep, we have chosen to keep the services private, for family and a very few friends. Graveside services only, very informal and short, with a few Disney tunes and classical music that she loved. We told the minister we don't want to focus on her disease, transplant, etc, other than to mention her bravery and positive outlook, because although her battle was of course a signigant part of her life over the past 4 years, we don't want it to define her now. We want to remember her, and not the damn disease.

Glenn's secretary opened a trust fund at a local bank for donations, in lieu of flowers, and it will be sent to the Leukemia and Lymphoma Society in Arielle's memory. I will post the info later.

We miss her terribly, and are in a state of shock over what Arielle went through over the past 4 years, and especially her last hours, trying to figure out what happened, etc.. Post-traumatic stress syndrome. I'm hoping that before too long, the flashbacks that we keep having of her struggling at the end will be replaced with all of the wonderful memories and happy times that we have of her..

Alanna is doing ok, shedding many tears of course for losing the best friend she could ever possibly have, and keeps asking me "can their be a miracle and Arielle will come back to us now?" We had talked so much of miracles lately, and every time I tell her that the only person that can come back is Jesus. A couple of hours later, she will ask me the same question again. Alanna was swinging on the wonderful playground equipment today that Make a Wish had installed for Arielle, and was shedding a few tears for her. Just then, 2 drops of water dropped down from the sky onto her lap. It must have been a sign from Arielle she felt, and we of course agree.

Will post later,
Love,
Priscilla

Wednesday, July 11, 2001 at 04:57 PM (CDT)

Dear Friends,
Early this morning, I finally figured things out - God only wants the most very special little angels on Earth up in heaven with Him, and that's why he chose Arielle.

Our beloved Arielle now has her Angel Wings, as of 7:23am this morning.

Love,
Priscilla

Tuesday, July 10, 2001 at 07:43 PM (CDT)

I just did a whole update, and it must be somewhere in cyberspace!

I don't have the time or energy to retell it all, other then to say that Arielle is in respiratory distess with pulmonary edema, secondary to the excess IV fluids she had yesterday in the ER, coupled with the sepsis' effect on her lungs, which cause increase permeability of the capillaries in the lungs, hench too much fluid in her lungs. Her respirations are between 80-120/minute, she in on oxygen at home, and we are awaiting the delivery of dilaudid IV and ativan drops to help ease off her respirations somewhat. She is still alert, but the minute her 100% oxygen comes off, she starts to decompensate.

Our onc, any myself, do not feel that hospitalization is appropriate at this point, she would have to go to ICU and be put on a ventilator - I could not do that to her, and during the night I was frank with Arielle re: her status and she said do not take me to the hospital. We did end up going, just to get her platelets and some alubumin and lasix to pass some of the extra fluids, which was partly successful.
Like I said, my detailed post re: the past 18 hours or so was deleted, and this is all I can say for now.
Other than to say bless you for all of your support and prayers, and please continue to pray for a miracle now, and more importantly, pray that her final hours will be Peaceful and that she will move on to the next world knowing how much she was loved.
Love,
Priscilla

Tuesday, July 10, 2001 at 12:14 AM (CDT)

Thanks so much for your prayers, Arielle really needs them now, she is very sick. The past week has been horrible for her, I don't have the time now to tell the whole story..

We are home, but only because she just can't take being in the hospital anymore, and we all pretty much agree she doesn't belong there at this point. She is septic (blood infection), there was so much bacteria that instead of having to wait 24+ hours for the lab to grow the bugs, they were positive in only about 8 hours. It is making all of her chemistries out of wack, and the unit of packed RBC's that she received just 2 days ago has already been used up by her body. I don't have time tonight to give the full story, but we spent 10 hours in the ER today giving her packed red cells, vancomycin,and fortaz. Plus, 2000cc's of IV hydration to try to restore her pressure. She is impacted from the vincristine and what I have just realized is double the dose of zofran that she should have been receiving (this was prescribed incorrectly) that we did an xray of her abdoman tonight and her intestines were so distended.... She is so uncomfortable, I wish we never gave her the **** vinc.

To make matters worse, we got an email tonight from Dr. K saying that if she hasn't cleared her peripheral blasts by now, then it's not working...
So,why are we putting her through all this??? She would be dying now if we didn't start her on antibiotics... Well, I guess it's because there are still others, such as in Isreal, who feel that she should have had donor leukocytes, which they can manipulate with IL2, to help clean up her leukemia... It is not looking good at this point that she will survive long enough for us to find help for her..
Again, please pray for Arielle.
Love
Priscilla

Thursday, 11:30pm PST

Hello everyone, I apologize for being late with this update. I did write one after Tuesday's onc appt, but someone in my family managed to delete it before I entered it here! I was too frustrated to retype it right away. So, here goes once again:

Arielle is having a rough time now. She doesn't get out of bed, or off the couch, except to use the bathroom. Eats only sparingly. Watches a bit of tv, but that's it. So tough to watch, her quality of life is non-existant right now. She has mouth sores, has lost most of her hair, and has stomach pain because of constipation secondary to the vincristine. She can't sleep at night, and keeps me up until 4am. (then she cat caps during the day) Poor baby!
But, after talking to the doctor and nurse on Tuesday, it looks like most of her complaints are not due to the leukemia, but is due to the fact that she is getting double the usual dose of PEG, (they said typically people complain of flu-like symptoms with the regular dose) plus etoposide on top of it, in addition to still recovering from the BMT. They said that actually they were surprised that it took her till now to become this weak. To top it off, she hasn't been eating enough and lost 12 pounds, from 60 to 48 pounds, and the doctor feels this accounts for a lot of her lack of energy. She started on TPN Tuesday night, but so far her nutritional status has not improved as evidenced by her protein and calcium stores still dropping in her labs... Hopefully, this will turn about quickly.
On the 4th of July, her platelets dropped to 2,000!!! I think this must be a record low, I've never heard of anyone reaching this low before, and why she didn't start spontaneously hemorrhaging is amazing to us. We did not let her out of bed until the platelets were ready, you can imagine if she had tripped or anything what could have happened!

The doctors in London are supposed to get back with us in a few more days re: the feasability of using Alanna's T cells to attack Arielle's leukemia cells. We know that there are many other new anti-leukemia treatments out there on the verge of being trialed, but it's just finding them! If anyone comes across anything remotely interesting, please don't hesitate to send it to me and we'll investigate. It will be so unbearable to lose her, and then a month or so later learn of a new "smart" therapy treatment that may have cured her.

Thanks for all you thoughts, prayers, emails, posts, and support.
Love,
Priscilla and Arielle

Sunday, July 01, 2001 at 12:52 AM (CDT)

Hello,
Just a quick update tonight to let everyone know that Arielle is doing ok. Her WBC is staying nice and low where the doctor's want it, and her blast count dropped this past week down to 1-2%. We spoke to the transplant doc at City of Hope, and he wants us to let her platelets drop down to 15,000 before transfusing her, unless she starts to bleed, because otherwise she may be capable of making platelets on her own but we will never know it if we keep "rescuing" her... He feels that her platelets aren't dropping that fast (she takes 4-5 days to use up a transfusion) and that she may be able to make her own. We'll give it a try. Her ANC is down to 100, so she has no ability to fight an infection. Hopefully, we have her well-covered with antibiotics and antifungals..

So she's hanging in there for now. She looked really good yesterday, quite peppy, today wasn't such a good day. It may be due to the fact that I gave her the VP-16 (etoposide) last night after she had eaten, and it should be given on an empty stomach to avoid nausea. She was just so hungry, I figured it wouldn't hurt, but she was up during the night feeling sick, wasn't quite right all day today with complaints of tummy pain, and just threw up tonight. So, I'm just hoping that it's a side effect of the VP-16, and not the start of something, and will be more careful in the future! For "just" being a pill, it seems to be quite strong as it has given her a sore in her mouth, and now her hair is falling out again! Usually it is IV chemo that causes this sort of impact. I think this must be the 8th time that her hair has fallen out! :-(

That's about it for now. Thanks for checking in, and keep those prayers and good thoughts coming!
Love,
Priscilla & Arielle

Wednesday, June 27, 2001 at 12:05 AM (CDT)

Hi,
Everything is status quo here. Under the circumstances, Arielle is doing quite well. Her WBC are staying between 1.9 -2.2, with blasts at 16% right now. She still has some "good" WBC hanging around which is sort of amazing, not enough to fight a major infection or anything, but atleast it's something (around 460)! And still no more fevers, I am very comforted by that. No pain or discomfort.

We saw Dr. H today for Arielle's 2nd set of 2 shots of PEG. She seemed pleased with how she was doing, except for her weight loss. Instead of putting Arielle on TPN to help her put some weight on (she is down to 49 pounds, pretty puny for a 9 year old), we are going to try a drug called megace which can stimulate the appetite, it's used in cancer and AIDS pts... Hope it works!

We have been very busy investigating any leads on new drugs on the horizon for Arielle. We did speak to the developer of the medication that we were told is going to be looked at by the NCI for leukemia, and he confirmed what we had researched, that it is good for T-cell disease and not B-cell.(B cell is the most common form of ALL, and what Arielle has. Why does it seem that the drs are slower coming up with drugs for the more common types of ALL, or does is it just seem that way because it is what my daughter has???!!) Rebecca/Courtney's mom had sent me an article that was published a year ago about a new therapy that would be trialed in London for ALL. Thanks, Rebecca! This is "targeted", smart therapy that only kills ALL cells, not the barbaric poisons that our kids are given which kills everything!! Once we got our hands on the complete article, we learned that both ALL & AML over-express the Wilm's tumor gene product, and they are devising directed immunotherapy with cytotoxic T-lymphoctyes that will destroy such cells, while leaving normal cells alone.. This has not been trialed on pts yet, and we learned today from the doctors in London that they should start clinical trials in 6 months. The doctor raised the possibility of taking Alanna's T-cells and manipulating them, then giving them back to Arielle - he didn't know if they could do it but he was interested and said he would discuss it.. But, I don't think we have 6 months to wait for this therapy, of that I'm quite sure. If anyone else comes up with articles of new therapies, please forward them to me. The only medications that I can say don't send any more info on, because we have ruled it out is Gleevac (STI-571) and CAMPATH. I told Glenn I think we should start checking out Germany, they are way ahead of us in cancer treatment, and our treatments for leukemia are actually copy-cats of their work. Glenn is also going to call Isreal.
For now, Arielle is feeling quite well, and Alanna, Arielle and I are spending our days caring for the 3 feral 6 week old kittens that we have managed to trap, plus we are continuing to try to trap the remaining 3 kittens and mother!! Lately, all I'm catching is oppossums and a racoon!! This is keeping us very busy, but A&A are loving every minute of it! There is a lady here that will take feral kittens, tame them somewhat, spay/neuter them, and then find homes for them. But she's out of town on vacation, so for now I'm stuck with the job. We are working on taming one of them who is quite passive, but the other 2 are real wildcats, and even with their little baby teeth have bitten through my leather gloves and drew "red stuff"on me! (I have realized that my cybersitter won't let me write the word "bl**d") Anyone looking for a kitty, please let me know. :-)
Thanks for checking in,
Priscilla

Saturday, June 23, 2001 at 11:43 PM (CDT)

Hello Friends,
Arielle is still doing ok, but losing more weight, down 10 pounds now (and she was thin to begin with) so we will request that she go back on the dreaded TPN (makes her sick to her stomach) Monday. She is hungry, and asks for food quite a bit, but then can only take a few bites before feeling full. Just part of the disease process, I guess.
We had to go in to the hospital last night for more platelets, looks like she'll need them every 4 days. Her total white count is down to 1.9, which the doctor finds very encouraging. (many kids at this point will have very high WBC's as the disease takes over). With this, her blast count (leukemia cells) have gone back up again to 25%, but our doctor says she doesn't care that much about that and the blasts are just coming out from where they have been hiding, and she looks more to the total white count at this point. (I have to apologize to those of you who are not medical savvy and may not always know what I'm talking about or it's signigance, but I have many friends here who are fighting the same fight and know all to well what I'm talking about!) She hasn't had a fever for 4 nights now, and hopefully the antibiotic, antifungal, and anti-shingles that she is on will keep her healthy..

Today, we attended a church for a special healing session, the pastor and the elders of the church all layed their hands upon Arielle, and Glenn, Alanna, and myself, and prayed for Arielle and annointed her with oil.. We have never participated in a healing prayer such as this before, and it was a very, very powerful, inspiring, and emotional event for all of us to have this group of 7 or 8 s pray for Arielle. We all cried many tears. Thank you, Sandy Lewis, for suggesting your church to us, they were wonderful, and it's the best thing that we can be doing for her at this point, I think.

We are pursuing information re: a medication that has been around for a few years now, but not used much for ALL. We have found out that it is very high on the National Cancer Institutes's list of meds that may prove useful for ALL and they will be researching it. So one doctor leads us to another who may know more about it, and so on, and ultimately we have found the developer of the med and hopefully will reach him next week to see what he thinks about using it...
So, that's about it for now.
I don't know if our cyber friends have any idea how important they are to us right now??? Please, give yourselves a pat on the back for being so encouraging to us, especially when so many of you are fighting your own battles for your children's lives...
Take care,
Love,
Priscilla

Thursday, June 21, 2001 at 11:23 PM (CDT)

Hi Everyone,

Thanks so much for signing Arielle's guestbook, it's wonderful to hear from so many of you around the country who may not know us personally, but still care enough about our precious little one to offer prayers and encouraging words...

I'll just do a quick update tonight. We are cautiously encouraged that Arielle does seem to be responding to her new protocol. Now, this is just a little glimmer of hope! We know it can't cure her, but if we can just buy her some more time, maybe something else can... Anyway, this mornings labs showed a drop in circulating blasts (cancer cells) from 25% to 16%, and overall her white cells dropped from 3.6 to 2.3 since Monday - which shows further that her bone marrow is being suppressed, which is what we want. If only this trend will continue!! She hasn't had a fever for the past 48 hours.

Her platelets aren't hanging around very long, no surprise here, and we'll have to go in tomorrow for another transfusion. Other than being ghostly pale and thin, she acts normal. Yesterday, she even donned a swimsuit and ran around with her sister and cousin through the sprinklers... It makes her situation seem all the more unbelievable...

Thanks again for checking in, and I will update again soon.

Take care,
Priscilla

Tuesday, June 19, 2001 at 11:45 PM (CDT)

Friday, June 15, 2001 at 11:24 PM (CDT)

Day T +100

Dear Friends, Here it is, on what is supposed to be our "big" day, when Arielle has her day 100 BMA, and we celebrate getting to this point, and discontinue many of her precautions... Oh well, at least she is still with us, and doing remarkably well for someone in her position. What a little fighter she is!

Her platelets did finally drop low enough on Wednesday for her to get a transfusion. Her HGB is hanging in there, as is her ANC, but it is steadly dropping, of course. Glenn, Matthew, and I are going to start direct-donating platelets and packed cells for her next week. It's the least we can do.

Things have changed quite a bit over the past 24 hours. Glenn spoke to Dr. K, the transplant onc who pretty much "invented" cord transplants, at Duke University in NC. I really didn't think she would help us, because she does transplants and what we need is a new medication from a research facilty. Well, I am happy to report that I was wrong. (Thanks Allison and May and others for encouraging us to speak to her.) She had some pretty strong opinions about Arielle's treatment thus far. I won't go into all of it here. But, she did feel that no one has been "aggressive" enough with Arielle yet. (boy, you could have fooled me!!) She and her partner have had children in similiar situations following BMT and have gotten them back into remission long enough to have a 2nd cord transplant, and are now survivors. Now, I am not counting on this for Arielle because I know how bad her disease is and I am not going to get my hopes way up, but just a little bit, enough to make it easier to get through the days...

The protocol they use is vincristine and PEG aspar every 7 days X 4, and 21 days of oral etoposide... We have decided to go for it, and our local doctor's think it's a good idea too.
I think this will cause her to lose her hair again, it has been growing in nicely, and give her some nausea and vomiting, but not too bad... No planned hospitalizations or anything. After day 30 BMA, she should get donor leukocyte infusion, meaning that they have to convince the donor and her donor center to take GCSF and procure white cells from her peripheral veins...

This is to happen after the chemo stops, so that the chemo won't kill off these white cells, and hopefully these WBC's will nuke remaining cancer... During this time, Arielle will remain off of the immunosuppressive therapy that she was on for BMT, to further inhance a graft vs leukemia effect. (this center has seen it work, and is in the process of writing a journal article reporting their success stories...) So to answer how could this rather mild chemotherapy help kids whereas the big guns failed, it is because you now have a new immune system hopefully helping you to fight the disease, and the donor leukoctyes.

All of this is a long shot for Arielle. But without it, she has only maybe 2 weeks left. It's incredible to think of this, especially because she still feels good, except for her lousey color and weight loss. (I think she needs to be put back on TPN.) The bottom line is that as long as her quality of life is good, and the treatment doesn't make her uncomfortable, then we have to go for it. Arielle definitely wants to do it too, and even has decided that the dreaded leg shots are ok..

So the past 24 hours has been very busy, as we talk to Duke, COH, and Cottage hospital doctors to coordinate all of this... Tonight, we start the etoposide, Monday Vincr, and Tues PEG asp, assuming that the hospital can get some, it is still very hard to come by..

I've reached the conclusion over the past few days that traveling out of the area to meet with a healing priest is just not possible at this time, because Arielle is too unstable with her counts dwindling down as the cancer takes over for us to consider leaving the area... So, I am looking into a more local healing prayer service for the time being, while doing all of the medical interventions for Arielle, I don't want to neglect the spiritual interventions because a miracle is really needed for this little one... Really, all I want to see happen is for Arielle to hang around long enough for one of the supposed dozen new leukemia targeted therapy to become available..

Again, your thoughts and special prayers means more to us than I can possible express. We can really feel this outpouring of support!

Take care,
Priscilla

Tuesday, June 12, 2001 at 10:49 AM (CDT)

First of all, I want to thank you all so very much for your kind words and prayers. And for those of you who have been helping me in my quest to find a miracle, a special thank you. It looks like I have several good leads, thanks Rebecca and Denise, to my priest. Many others have helped too and it's greatly appreciated.
Although I have been ready to "somewhat" accept where we are now and to only look for a divine intervention, after all Arielle has exhausted all medical options at this time, the efforts of my husband and others to try one more time to find a new, novel therapy has convinced me to make one last effort along this line... I am not willing, nor would I think any doctor be willing, to give Arielle any more chemotherapy, but if there is any "targeted" antileukemic , we'll try it. I have done more research into the STI 571 (Gleevec) which has been in the news so much, I thought perhaps we could plead for that on compassionate grounds and bring up the fact that although Arielle does not have CML or AML, her ALL is similiar to AML in some ways.. But the more I research the more it seems to be geared specifically for the Philadelphia chromosome translocation, which Arielle does not have.

Glenn is going to try to reach Dr. Uckun in MN to see if he has released any more new to trial, or if he knows of any where in the world where we could go...

We are spending our days doing whatever Arielle wants to do while she is feeling well because we know it's not going to last long. Thankfully, for some reason her bone pain is gone and she is feeling better. We have gone to the beach, zoo, and eaten out in restaurants on the ocean front for the first time in a very long time (this is not allowed after BMT, but I have tossed out all of the restrictions such as making her wear a heavy mask outside etc...)

Arielle and I decided not to go through with the ASP injections as a day spent in the hospital is one less day that she can enjoy, and each day is precious. Our local onc concurrs. So we are going to go with IV vincristine every 10 days, and she can have this at home, I gave her the first dose of it yesterday. (I never would have believed how my nursing training would come in handy...) The vinc doesn't cause her any side effects. It's a long shot, but apparently there have been some kids who have relapsed after BMT and were sustained for a period of time on vincristine..

Her platelets have not dropped low enough yet to need a transfusion, but will probably start needing them by tomorrow (they are at 28,000 as of last night).

A good friend of my husband, who happens to be an oncologist, thinks it bunch of **** that anyone is suggesting vincristine and platelet transfusions at this time, that with 85% blasts in her marrow, it is hopeless and she should be allowed to die soon. But, he is not her parent, and we are not going to let her bleed if we can do anything about it. I fear he is right though, but a little bit of vinc isn't going to hurt and we'll know soon if she is going to respond at all to it..

Well, time to go "seize the day", we'll probably go to a local pizza parlor this afternoon which has lots of arcade games (like a Chucky Cheese) today, or whatever her little heart desires.

Thanks again, and please keep those prayers coming. If any one of you have anything that may help our desperate situation, please feel free to email me privately.

(please excuse the typos in my updates, also my "cyber sitter" doesn't like some words and automatically deletes them on me!!)

Take care,
Priscilla

Friday, June 08, 2001 at 08:58 PM (CDT)

There are no words to describe this day to you, other than we have so many times faced horrible trauma over the past 4 years, and we think it can't get worse than this, but it does.... Arielle is full of cancer. Her marrow was so packed this morning that the transplant doctor had to do a bone marrow biopsy (actually take a piece of bone) versus an aspiration because he could not aspirate enough marrow (which is thin, watery usually) to run the tests. We knew things were really bad at that point, and the doctor admitted that he was concerned. He told us he would call us in about 2 hours and then we would return to COH for the results.. We went back to our motel room for an agonizing 2 hours, then returned to COH because we couldn't stand it anymore... When we got to the peds clinic, we found out that the CBC that they had drawn there had 4% blasts (Leukemia cells) in the peripheral .. We still had some hope, sometimes marrow that is in really bad shape will throw out blasts... We then waited another hour for the doctor to get back to clinic, meanwhile the three of us prayed and cried together... The doctor came in and said she is packed with leukemia cells, 85% in the marrow. How she could have tests show 100% donor just 2 weeks ago is amazing.. The doctor said that these cancer cells are like super hybrids that have had years of chemo exposure so they are incredibly virulent..
Doctor suggests we begin "palliative" treatment (meaning, giving small amounts of chemo just to prolong her life and give her a bit more time to do some fun things) on Monday -vincristine and asparaginaze injections.
I don't know if we will do that or not, as we don't think anything is going to come close to slowing down this monster at this point, and why put her through more shots and hospital time??
And of course, he said there are always miracles... Well, that's what we need now. Glenn and I think she probably only has a couple of weeks left, as this disease is progressing so rapidly..
I'll post what's going to happen in the near future. What I really want to do is fly to Rhode Island and have Arielle be healed by a Catholic priest who is accepted by Rome as having the ability to heal... (saw it on 20:20 or some such show years ago..) Anyone else know what I'm talking about?? Of course, with Glenn being Jewish, this is going to be a tough sell... I said, fine, locate us some Rabbi's who can perform miracles and we'll go there...
Thanks for your ongoing support. We are so afraid of how she is going to suffer, and how Alanna will make it through..
Take care,
Priscilla

Thursday, June 07, 2001 at 02:56 PM (CDT)

T Day +92

Hi Friends, Please say a prayer for Arielle tonight, that she has either a bad virus, or graft versus host disease going on inside of her bone marrow. She continues to have intermittant fevers, bad back or leg pain, poor appetite (will need an infusion of albumin tomorrow because her protein is so low), and now her platelets have fallen even more, to 39,000. They haven't been this low since right after transplant.
This morning, our transplant doctor called and said that he wants to do a bone marrow biopsy on Arielle in the morning to rule out what is going on.. (And he didn't even know of this morning's further drop in platelets, last he knew they were still 65,000. WBC is normal, but her left shift which means bacterial infection has gone the other way to a right shift looking more like virus, now what the heck is this all about?? Plus, she has all of the abnormal red cells that we see during chemotherapy?? ANC is still ok at 2,835, but dropped from 5,000.)

She's supposed to have a bone marrow biopsy done next Friday, June 15th, which would be her official "Day 100" bone marrow check, but he wants to do one now instead. He was up in the middle of the night, and it hit him that we need to check up on Arielle's marrow ASAP... He has a hunch that it could be GVHD in the marrow. We are praying that it what it is, because the alternative is relapse..
We leave tonight for a hotel nearby COH so we can be there early in the morning. Glenn is taking the day off so he can come too.
I'll update as soon as I get some results.
Thanks so much for your well wishes and prayers, please remember her tonight and tomorrow at 9am..
Take care,
Priscilla

Monday, June 04, 2001 at 11:08 PM (CDT)

Monday, June 04, 2001 at 10:49 PM (CDT)

Day T +89
Yes, we are home and doing much better. At first our onc said it was a virus for sure, as she had 3 other kids with fever/body & joint pain just like Arielle, but when she saw her white cell count and the drop in her platelets, she knew it was a bacterial infection. Cultures were negative, but they can be like finding a needle in a haystack... So, we spent a couple of sleepless nights in "Hotel Cottage" (I believe we had a new nurse on the night shift who was nervous with Arielle and woke us up every hour!) and then were allowed to return home. She was still spiking temp, but the onc has a good rapport with us and knew we'd be watching her like a hawk. And almost just as imporantly, our onc has treated Arielle for 4 years now and has the same philosophy as we do at this point, which is that Arielle has had enough of treatment/hospitalization, and needs to be home as much as possible. So, we get to go home when under more typical situation we would remain inpatient.. We are very grateful to Dr. H, for being so understanding..

The IV fortaz every 8 hours has taken care of her fevers now, and her body pain, which was pretty bad, is gone now. Her platelets are still low as a side effect from the infection.
We did have one highlight while in the hospital, our fellow ALL_KIDS friend Bob/dad to Zoe/ALL survivor, came by for a nice visit with his gold!! flute and played some beautiful music for us. And, of course, a Beanie Baby for Arielle! Thanks, Bob!

So between now and Friday, I'm just "babying" Arielle til she gets back to normal again, she has lost weight and has extra low energy, and I want the transplant doctor to be happy when he sees her Friday (oh, please, no more TPN!!). Thanks for checking in,
Take care,

Thursday, May 31, 2001 at 09:06 PM (CDT)

I'm adding an update to Thursday afternoon's journal, and for some reason caringbridge is not letting me just add to the existing journal, so if you haven't read the news about Arielle's donor engraftment test, please check in the "previous update" area!

No sooner had I written that I'm suspicious of something going on, when Arielle walked into the room looking not quite right to me, and a quick hug showed her to be very hot - temp 102. I did some quick blood cultures and urine cultures, made a few phone calls, and COH told me not to come there as it would take to long and get her to Santa Barbara to my old oncologist instead. So we are inpatient now, boy things can change so fast! I can't believe we are back in the hospital. Arielle is very tearful, but I'm keeping an upbeat attitude for her - hey we don't have to drive to City of Hope this week! and it's obvious that something is going on infection-wise, so this is the best thing for us to do etc... We've only been home since May 11th, just not quite long enough!!
We'll have some preliminary test results by tomorrow so I'll try to update, for now we don't know what's going on.
Thanks for the guestbook entries! I'll read them to Arielle tomorrow.
Priscilla

Weds. May 30, 2001

It has been a very anxious day for us, but we have no news. I made 2 phone calls to COH, and the test results are not available yet. Maybe tomorrow. I think it's because of the holiday weekend, I remember now another child had similiar tests done over Easter weekend and had to wait an extra agonizing 2 days! Thanks for your thoughts and prayers, Priscilla



Hi, Thanks so much for the well-wishes and prayers. It means so much to us.

Arielle and I left for COH at 8am and arrived back home about 6:30pm. All is ok for now. Our onc does not feel it is necessary yet to do a BMA (bone marrow aspiration) to check for relapse. He feels that it could be 1) something viral going on 2) a "normal" downward trend of her counts, and that it can take a year or two for her counts to return to normal. He also pointed out that her segs (the most important type of White cells) are still high, and even tho her total WBC has dropped, the seg % has increased, and that he would not expect to see that with relapse. He also informed me that the PCR (which check to make sure that Arielle is still 100% donor cells, and has the ability to check 1 or 2 million cells) was still 100% donor as of May 11. This is good to him.
But, I asked him if it were not possible for her marrow to have a relapse, while the peripheral shows no cancer (this is exactly what happened to her at relapse - she had good peripheral counts with marrow full of leukemia). He said that the PCR is quite sensitive and accurate, and that if what I described did in fact occur, the PCR results would not remain 100% for long.... With that comment, he ordered a repeat of the PCR testing, and said that nothing is certain, but he feels ok with things right now... We will have the results of the test by Weds. this week. Also, Arielle started complaining of leg pain, bad enough to need codeine for relief, yesterday... (Many of you know that pain in the long bones is often an early sign of leukemia as the marrow gets packed with large "blasts" and is very painful.) So, Glenn and I were having a hard time getting through the day yesterday... But again, Dr. Rosenthal did not see anything suspicious with the pain that Arielle described.

We are feeling better now about the possibility of this being something other than relapse, but we know full well what a monster her leukemia turned into over the 3 years she received chemo and it cloned itself in order to be able to defeat any chemo out there.. Knowing what we know about her disease, we have no doubt of it's capacity to be around at this point and doing things the oncs don't usually see. We hope and pray that Dr. R. is right. I'm really impressed with his care of Arielle, so many doctors just follow protocols or roadmaps and don't think independantly, Dr. R is definitely looking out for Arielle and I have seen in past months how he is being more careful and watchful of Arielle then he is of other kids who are more "standard" risk. This really increases my faith in him.

Arielle has had some mild GVH on her face this week, (it looks like a faint pink/pimply rash), so that I did not think he would want to further decrease her meds.. But he did, he said he's hoping for some GVL, and she will only be taking the prograff every other day now. This is very, very low dose treatment..

And on a happy note, drum roll here please..... Tonight is the first night since Feb. 26 that Arielle will no longer be hooked up to IV's!! Yep, she is off all IV's as of tonight! Neither of us has slept an entire night since Feb., without getting up to use the bathroom, IV's beeping, etc... For instance, last night we were up 3 times!! This is going to be such a treat for both of us! Now she has to drink, drink all day long to make up for the lost fluids and to flush the prograff out of her system.

So, those of you who are inclined to pray, please do so, or send out good positive thoughts our way, that we will receive good news on Weds.
Take care,
Priscilla

Thursday, May 24, 2001 at 01:52 PM (CDT)

Day T +78

We are really concerned now, Arielle's lab results (WBC, HGB, and Platelets) have all dropped again for the 2nd week in a row. This is not good. We are expecting to hear from Dr. Rosenthal this afternoon. Also, have an appt with him tomorrow for a checkup. We don't think we'll be waiting til day 100 (June 15) to repeat the BMA (bone marrow aspiration) as the protocol calls for but he'll probably want to repeat in next week.
Please pray for Arielle.
Priscilla

Sunday, May 20, 2001 at 07:42 PM (CDT)

Hi,
We saw the doctor in City of Hope on Friday. All was ok, except Arielle is having a drop in her platelets. We aren't panicking yet, and the doctor says it could be either a normal dip, or graft versus host disease kicking in. He said he will keep a close eye on it. I hope it comes back up next labs, my ALL-parents know that a drop in platelets can be the first sign of relapse. Don't even want to go there!!

Other than that,she continues to look good. He cut back even more on the prograf , but when I got home I noticed some bumps on her face. Don't think it's GVHD, but the onc on call this weekend said to keep her on the current dose and that I probably should make another trip in to COH early in the week... :-(

I'll update following her next appt, whenever it turns out to be!
Take care,
Priscilla

Wednesday, May 16, 2001 at 10:32 PM (CDT)

Hello everyone,
There's no place like home, there's no place like home... Arielle and I just keep saying that over and over again.. She is doing great. I think the City of Hope is quite wise in allowing it's pediatric pts to leave the campus and return home as soon as they are stable (many transplant centers require you to remain for 100 days no matter how well you do, and COH apparently does require it of the over 18 yo MUD pts.) because they recover faster at home. For instance, since we have been home Arielle hasn't needed any zofran for nausea, she just eats more frequently to keep it at bay, but not so while at COH. She is much more energetic and not requiring the frequent rests that she did just a few days ago at COH.... As a matter of fact, today we went with Nancy and Emily to the beach for the first time in a very, very long time. I wasn't sure how long she would last, but we spent close to 2 hours there and she had a great time, no complaints... (she of course, was totally covered up with pants, jacket, heavy mask, hat, hood, shoes, and gloves to that she could pick up shells etc.. !!) I just think the faster they can get these kids home, the better...
I apologize for being so late in this update, as my SIL Shirley mentioned I came home to some mini-disasters and the amount of unpacking we have had is incredible (still working on it!). Plus, Matthew has finals in college this week, and he has been living on the computer the past few days (apparently finally completing his research papers that were probably assigned months ago!) It IS nice though to be back on my "normal" PC instead of the laptop...

Well, Friday we go back to COH (8 hour drive, roundtrip) for her first appt since discharge. The onc is going to let me do her labs on Thursday here at home so that we can cut back on our time at COH, and hopefully return the same day but I will always bring an overnight suitcase with us just in case... I'm hoping that he will d/c her prograff, the antirejection that she's on, and maybe even d/c her night time 12 hour IV infusion... We are both tired of waking up at night, Arielle and I haven't had straight 8 hours sleep since I don't know when!! :-)
Anyway, thanks for all of your well-wishes and prayers, but please don't stop yet!! Now her real battle begins to save her life! A major milestone will be here on June 15th, when Arielle has her day 100 bone marrow aspiration to check for cancer... I have heard that many relapses show up on this BMA... We will be nervous wrecks!!
Take care, and I will update sometime over the weekend re: Friday's appt.
Priscilla


--------------------------------------------------------------------------------

Thursday May 9

Just a quick note, it's Thursday evening and Arielle is doing well, so I am packing up in anticipation of a discharge tomorrow afternoon. If I don't do the usual Friday-night-update-following-drs. appt., you'll know that means good news!! :-) I'll leave Tuesday's update up for the time being... By for now, P.

Day T +62

Great News! If all remains well/stable between now and Friday, we will go home after Friday's dr. appt! Can't wait! We have learned not to get too excited to avoid too much disappointments, but we feel pretty confident that we'll be out of here. We will return for weekly followup visits for a long time - I thought it was just the first 100 days but apparently it goes on much longer than that. If Arielle gets sick after discharge, he will let our oncologist in Santa Barbara treat her - more good news - as with a 4 hour drive without traffic, it wouldn't be safe to come back to COH if she is sick, whereas Santa Barbara is only 2 hours.

Dr. R. totally stopped one of her antirejection drugs, and will work on stopping the remaining one soon. More good news: Arielle's immunoglobulin levels are within normal limits, (this will save her from having any more 4 hour infusions of gammaguard!) and that coupled with the low dose of antirejection drugs (which serve to suppress the immune system) that she is on means that she will be able to return to normal activities probably within 5 months - the "norm" is to wait a full year before you can return to school, church activities, etc...

I have to say that she is doing so well, really things couldn't be better for her right now. (I hate to jinx her!) She is tired a lot and nauseated, but hey who wouldn't be with a HGB of 10 all of the time! Now, we just have to continue to hope and pray that her new immune system is going to town on her leukemia. She deserves it!
Love to all,
Priscilla and Arielle

Sunday, May 07, 2001 at 10:37 PM (PDT)

Hi Everyone,
I'm late with Friday's update, Glenn was here for the weekend so I've been busy. I actually went to the movies (by myself, but who cares!) for the first time since I don't know how long (maybe November?), it was a treat! We also went to Descanso Gardens and took a drive in the nearby mountains.
Friday's dr. appt. went well, saw one of our onc's partners. This other doctor said we shouldn't get upset over Arielle's lack of apparent GVHD, as what is visible is probably only the tip of the iceberg, so in other words there is probably activity internally even though we aren't seeing it externally. So this is quite a different opinion from our regular onc, hope this doc is right! Dr. did cut her antirejection drug down even further on Friday, this is good to get her off these drugs ASAP as they are very toxic and have a plethora of serious side effects..

Arielle's labs are stable, her HGB always stays around 10.4 and platelets around 125-140,000, no higher... This is probably the big difference between the ususal chemo and BMT, if she had just had heavy chemo, her counts would be nice and high by now, but following BMT it seems that they just sort of putz around indefinitely... She is lucky that her platelets are this high though, many people hover in the 50,000 range, which means they can't do things such as ride a bike or anything that could cause bruising... Arirelle doesn't have to limit her activity, but the constant anemia makes it hard and she is tired most of the time... I would love to give her a unit of my blood to get her into the usual 12 range!!

Arielle had her donor % test done again, and the results came in last week and she is still 100% donor. The doctor said he would repeat it again this week. I'm glad for these results, but at the same time it serves as a reminder to me of how precarious Arielle's remission state is and that the doctor is being extra cautious with her, as the other kids are not having these tests repeated the way Arielle is. (The onc is just relying on the day 30 BMA results and will repeat the tests on day 100 for the other pts.) All of the other children,who have become our friends over the past few months, went home last week. It's going to be lonely here! But 3 of us have decided to make sure we have our weekly return visits on the same day so that we can see each other each week and keep in touch..

Alanna was absolutely supposed to return with Glenn tonight, but we just couldn't let her go! She is just too good for both Arielle and I, so she will stay with us until we return home.

Thanks for your posts,
Take care,
Priscilla and Arielle

Wednesday, May 02, 2001 at 07:33 PM (CDT)

Day T +56

I can't believe that it's already 56 days post-transplant, and that we've been away from home for 66 days now. In some ways it seems like forever, but in other ways it's flying by...

We saw the onc yesterday, nothing new. Which is good, of course. He just made a comment "Dr. __ may not believe in graft vs leukemia, but here we do..." I told him that I'm not sure if it exists, but that I'm counting on it in Arielle's case! So, he's just letting me know again that he's not letting us out of here until it flares up... (we watch how we say things as it is always in front of Arielle, but she does understand the signifigance of GVH and GVL and that we want her to have it) I know he is only looking out for her best interest, but it's a bit hard as the other kids are leaving! Fortunately, we have decided to keep Alanna here with us until we know exactly how many weeks we are going to be here, she keeps Arielle hopping!

That's about it for now.

Thanks for checking in!
Priscilla

Monday, April 30, 2001 at 8:52 PM (CDT)

Hi everybody, sorry I was not able to update on Friday following Arielle's oncologist visit, but as usual I had some problems with the laptop and got disgusted! Someone told me that the phone lines here in the "Village" are ancient and in poor shape and that is most likely the problem.

Anyway, Friday's appt went ok, except while all of our little friends are going home this Friday, May 4th, we have to stick around for another week (and we have been inpt for a week longer than everyone else too!). Boohoo :-( The doctor said he would like to us around for at least 2 more weeks, as he wants to watch Arielle as he continues to decrease her anti-rejection meds. I know what he means, without saying it aloud, that Arielle needs some GVHD right now and he wants to keep her til it appears. And there's none yet. We go back in tomorrow and I hope he'll decrease her meds even more.

TPN was d/c'd on Friday - yeah!! Now she just gets IV fluids each night which runs over 12 hours, to make sure we flush out the antirejection drugs which are hard on the kidneys, and replace the magnesium and potassium which gets depleted with those drugs too.

Hair Update!! Arielle is getting lots of hair sprouting on her head now, but guess what - it's not the usual blond, it's almost black!! I've heard of this happening before, with hair color changing after chemo/transplant, but I just hope it's temporary!! Won't that be strange, no one would every believe that Arielle and Alanna are identical twins if they have 2 different hair colors!! :-)

So everything is ok for now, still feels sick and no energy in the morning, but improves in the afternoon and evening. No active vomiting though since Friday, so that's good. A tip to my other friends dealing with cancer: zofran now comes in an 8mg tablet, lasts for 24 hours, is just as effective as the IV form, just needs to be melted on the tongue instead of swallowed, and tastes a lot like cotton candy!

We see the doctor again tomorrow, so I will try to update again Tues. or Weds.

Take care, and thanks so much for your well wishes and notes to Arielle and I,
Priscilla & Arielle

Wednesday, April 25, 2001 at 03:49 PM (CDT)

Hello,
Just a quick update, had our doctor's appt yesterday but the laptop was acting difficult again so I couldn't update.

All continues to go well, HGB and WBC's stable, and platelets creeping up to 146,000. Arielle's doc cut one of her antirejection drugs down even further, still no GVH. It's a real fine line, between having a problem with GVHD vs having just enough GVHD to nuke cancer cells... Hopefully we'll get to the "right" spot soon..

Arielle feels ok, mornings still give her problems, but all in all she's doing ok. I need to do a better job of adjusting to her delicate post BMT health, I've expected a bit too much from her I think... I took her to Descanso Gardens on Monday, we went early just as they opened to avoid people. We only stayed for an hour or so, and spent it on a tram taking a tour of the gardens, but she's wasn't well enough to enjoy it. Today, I thought it would be a good thing for us to walk over to the Japanese Garden, but it's getting hot here already, Arielle needs to wear pants and long sleeved tops, hat, plus a very heavy mask when she gets outside... By the time we got back home, she was vomiting, I believe from being hot/stuffy and not feeling 100% to begin with... But she does play and get quite energetic, especially iin the late afternoons...I guess I just have to let her be active at home so that she can rest when she wants and not overly exert herself.. I suppose it can be tough to know when it's good to encourage some activity and when it's not... I'm learning though! When we return home, I'll have to work things out so that she can sleep late in the mornings, and juggle things so that Arielle is not being shlepped around as I take Alanna to her activities...
That's about all for now.
Take care,
Priscilla

Sunday, April 22, 2001 at 9:27 PM (PDT)

Hi Everybody, Sorry that I didn't get the update posted here Friday, although I certainly tried! I typed up a pretty long update, which is still lost somewhere in cyberspace! I was so mad at all that waste that I didn't get around to attempting to re-write one till now...

All is well with Arielle, her temps have subsided, and we believe they may have been due to a recurrence of the chronic sinusitis that she was dx with via MRI prior to BMT. She's switched from IV antibiotics to pills now.

We have cut back on her other antirejection drug, as she has had zero graft vs host disease for over a week now and the doctor wants to see a tad now... I'm sure he's thinking that it's about time for the residual cancer cells that managed to survive the onslaught of radiation and chemo to "wake up" and start multiplying (I read somewhere that they clone themselves, or double, every 12 hours) and he wants Arielle's new immune system to act like "Pac man" and wage war against them!

My sister Nancy and her little one Emily were here for the weekend, we had a nice visit, especially so because they came here to celebrate Emily's 5th birthday. She also brought Alanna here too, now that the coast appears to be clear that Arielle won't be admitted to the hospital. Alanna is absolutely, the very best medicine for Arielle and we love having her around.
Well, it's late, I'm tired, and I really don't remember whatelse I wrote about last Friday! Thanks to all of you for visiting.
Love, Arielle, Alanna, and Priscilla

Wednesday, April 18, 2001 at 9:25 PM (PDT)

Hi,
T Day +42

Today turned out to be a duplicate of yesterday. By bedtime lastnight, Arielle had a low grade temp, which thankfully stayed at about 100, so we didn't have to make any midnight runs to the hospital. By morning, her temp was 101.8, which means an admission. But, the onc decided to see her in the clinic first and assess things there.. Wouldn't you know it, just like yesterday, by the time we reached the clinic her temp was normal!!! I assured the doctor that I do NOT have Munchausen Sydrome by Proxy!! :-) Just in case it happened again, I brought along one of the "tempa dots" a nurse had given me, to show that her temp was up. The onc was very nice and assured me that they believed me, and that they had another pt the previous day go through the same thing.... Anyway, today they did more blood cultures and also gave Arielle an IV antibiotic, we will go back to clinic tomorrow for another dose. And as usual, her temp tonight is creeping back up again...
The preliminary culture results should be ready by tomorrow, hopefully they'll all be negative and this will be considered viral.
We are just thankful that her temp is only up here at home, if the situation was reversed and the docs saw a temp, we would have to go right in... And, she still looks good, we even went on a hike today with my brother Jim, my father, and Alanna in a beautiful park through the wilderness, amazing to think that we were still located within LA and be in the middle of mountain lion and black bear country! Right now, she's sitting up in bed doing some artwork..

I sent Alanna back home tonight with my Dad as I am still concerned that we might have an admission and then we'd really be stuck.
Everything else is status quo.
Thanks for checking,
Love,
P&A

Wednesday, April 18, 2001 at10:03 AM (CDT)

Day T 41

Hi, Arielle is uncomfortably close to a hospital admission right now. We just do not want to go back in! She started with a temp last night, but it was just from 99.5 to 100.3, so I waited till this am to call the
dr. Since we had an appt at 12pm today anyway, they said it was ok to wait till then to come in. They added some additional blood work to the usual tests, including checking to see if her CMV virus has been reactivated (CMV is something that >50% of the world is positive for, but is not a problem unless you are undergoing a transplant) and she also had to have nasal washing done (a syringe full of saline squirted up both nostrils, then a long suction tube inserted up her nose to suck it back out to get a culture - not fun!) to see if she has a virus growing. Of course, once I got there and the nurses checked her temp, it was normal, and they just looked at me and said perhaps you need a new thermometer! Now, of course, the same thing is happening, her temp is 100 again this evening, so it looks like a replay of last night! I will have to call them in the am again and see what they say, plus recheck her during the night. A fever following transplant (101.3) is an automatic admission, but I know they also consider a continuous temp elevation to be just as bad. One nurse told me to go buy an old-fashioned glass-mercury thermometer as they are more accurate - but I checked out three drug stores and they apparently don't make them anymore! We're just keeping our fingers crossed that everything will be ok.

Her labs were ok, WBC up to 5.5 now, HGB dropped a bit, and platelets stable at 133,000. We also ended up staying in the clinic most of the day as her magnesium was low (a side effect of the immunosuppression drugs she's on) and she needed a 2 hour infusion of same. One of her drugs (cellcept) has been reduced as she doesn't have GVHD anymore. TPN was adjusted too, same fluid volume but a reduction in the glucose - all of this is good progress!

Thanks so much for checking up on Arielle. Alanna and Arielle love hearing from all of you!
Love,
Priscilla

Sunday, April 15, 2001 at 07:12 PM (PDT)

Happy Easter everyone! Hope all of you had a nice holiday weekend. We certainly did, with Alanna here and Glenn down for the weekend, it made for an especially nice few days. Alanna is going to stay here a bit longer, it makes such a difference in Arielle, and of course I've missed her too. My dad and brother Jim will be here for a short visit on Wednesday, and Alanna may return home with my father at that time if she's real anxious to get back home.

I'm sorry that I missed updating the past few days, in this new room it's been tough getting on the computer for a lot of reasons - extra busy with the 2 girls, hooking Arielle up to TPN to meet her nutritional needs every night, hooking up the neighbor's TPN as a favor each night, pulling out the bed to access the outlet, slow internet access for some reason here, having to share internet access with people at home.... you get the picture! So, I think what I'll do for the time being is just update on Tuesdays and Fridays, after Arielle's doctor's visit, unless there's anything new.

For now, everything is going well. The doctor cut back her TPN from 1500cc to 1000cc, her counts are stable and she is not needing any transfusions, HGB >11, platelets 136,000, and WBC 3.6. Her GVHD is gone. She was able to walk all the way from the "Village" (our little room) to the doctor's appt on Friday (the trams were not running for some reason) and Dr. S. was quite impressed that she has that much stamina already. She does need to rest once or twice a day, not actually sleep but lie down, and I have noticed that if she runs around after Alanna she gets quite SOB and turns a bit blue. I guess this is no surprise, I wonder what her pulmonary function tests would be like now after the irradiation?? I'm going to ask for this to be repeated over the next few months...

Right now, my toughest issue is that the girls and I would like to leave the hospital campus and go do something for a change, but what??? Where can we go in a city the size of Los Angeles and do something where we won't be around any people?? Pretty tough order!

As you can probably tell, things are going as well as possible here, and we feel so blessed by Arielle's good health. Now, if only this new immune system she has can beat this monster disease!

Thanks for all of your wonderful entries in the guestbook, Arielle is always thrilled to hear from you. I wish I had more time available on the net to respond to everyone individually!

Love,
Priscilla & Arielle

Wednesday, April 11, 2001 at 03:27 PM (CDT)

Day T +35

Great news! We FINALLY got the report from Friday's BMA (I think waiting for results is about the worst thing we parents have to go through!), the onc's nurse just called, and Arielle is 100% donor!!!!!!! Doesn't get any better than that! Her next signifigant hurtle will be the day 100 BMA, which will be June 15th. I read recently that the majority of relapses occur within the first 100 days, so it will be a very, very important test. After that, the test is repeated at one year or as needed, and then yearly after that.. Of course, there will be frequent blood tests to monitor things. She will not be out of the woods for at least 2 more years.

We moved into the village as planned on Monday, April 9th. That was a bittersweet day for us, as it was exactly 4 years to the day of Arielle's diagnosis. Kind of strange to think about, that 4 years earlier we were going through such unbelievable stuff, and here it is 4 years later "graduating" out of the BMT unit... Full circle! The nurses and I decided that it was probably a very good omen..

My father, brother Jim and his wife May, their kids Judith and Jeanette, arrived yesterday with a special little package for us - Arielle's twin sister Alanna! Alanna will stay with us through at least Easter. We have been gone from each other too long, weeks and weeks at a time since Arielle relapsed in July, and Alanna was getting very depressed about things. I have noticed among the other parents here, that it is the kids left at home that are having the most emotional problems, acting out, etc.., not their sick kids..
It was nice to visit with everyone for a few hours, and Jim prepared a special dish for Arielle that she has been craving - steamed fresh Maine Lobster! One would think she may want something like chicken soup, coming out of the hospital, but no, she wanted lobster! And she is wanting more already!

I am so happy to have such good news to post. But, at the same time, I am reminded of how delicate her health is, and will remain for a very long time... Our little friend Pascale White, who is about 4 months ahead of us in BMT, has been hospitalized in critical condition with an infection and seizures. We are praying for her, but as I said, it both frightens us and reminds us of how long we have to go...

For now, Arielle is doing great, her graft versus host disease appears to be gradually subsiding, her appetite if ok, and her energy is quite good. Today, we returned to the BMT unit to do crafts with our other friends and both the EAster bunny stopped by for a visit and about 10 police officers to give out bunnies (not as pretty as Rainbow, of course!)and Easter baskets.. The day before, a Boy Scout Troop gave out gift baskets to the kids. Everywhere you look, there are volunteers doing what they can for the cancer patients here.

Thanks so much for your prayers and good thoughts,
Love,
Arielle and Priscilla

Sunday, April 08, 2001 at 12:49 PM (PDT)

Day +32

Hi everyone, It looks like it's a go for us to move to "Parsons Village" tomorrow. Arielle's blood cultures came back negative. Unless there's some unforseen disaster in the next 24 hours (like fevers), we will be in room #131. It's like a small duplex, sparcely furnished with 2 twin beds, a small table and 2 chairs, small kitchenette, 1 upholstered chair, and drum roll here.... a shower/tub, our own bathroom!!! I'm just sooo thrilled to have our own BR!! She will have TPN (IV food) running at night, but be off all IV's during the day. She will have to wear a heavy mask when she leaves our room, stay out of any places where there are other people, and remain on this "low bacteria" (ie no fresh fruit except for bananas or oranges, no fresh veggies, or food cooked in the microwave, no restuarant/fastfood, no dairy or bakery, or basically anything other than what I cook, and then no leftovers, nothing in freezer for over 7 days, the list goes on!!) till day 100, which is June 15th.

Hopefully, I will not be updating tomorrow, because I will be too busy moving! So you can look for an update on Tuesday.

I want to say a special thank you to those who have passed Arielle's webpage to their friends, especially my SIL Shirley - who although lives far away from us, has been such a great support to us, and Beth, an ALL_KIDS member who passed this site to her Faith site, a big THANK YOU!! :-)
Love to all,
Priscilla

Friday, April 06, 2001 at 05:01 PM (PDT)

Day +31
Not much going on, I'm going to leave yesterday's update up for anyone who missed it... Uneventful day today, except Arielle did get a unit of packed cells (Glenn's direct donation), it's normal for the RBC's and WBC's to flucuate for some time... Also, we had a nice visit from our neighbors, the Curry's, always great to see them! Thanks for the wonderful guestbook messages, I can't tell you how much it means to us! Love, Priscilla & Arielle
Day +30

Great news!! Dr. Rosenthal just walked in after visiting the lab and the pathologists, and there is no evidence of blasts!! (these are the leukemia cells)
We were so afraid of this test, can you imagine she has had at least 10 BMA's done since she relapsed in July, and never has she been "clean". We are so relieved.

As far as the oncologist is concerned, the most signifigant result will not be available til Tuesday, this is when they can tell if the marrow has fully engrafted or not, versus if Arielle's old cells are still hanging around - which we do not want.

Also, she is showing some early signs of mild GVHD, a fine rash on her upper arms and across her shoulders. If it doesn't get any worse than it is now, we don't have to treat it with anything other then what she's already on. We like seeing some GVHD, and can just envision the new cells nuking any residual leukemia along the way..

I just want to say thank God, and thanks to all of you who have been praying for this precious little girl!
Love,
Priscilla and Arielle

Thursday, April 05, 2001 at 06:56 PM (PDT)

Well, everyone, all I have to say for tonight is that if you are inclined to pray, meditate, send good vibrations, or whatever, please do so for Arielle tonight! It's BMA tomorrow at 11am. We should get the morphology results by tomorrow nite (ie what the cells look like, any leukemia cells), but to the docs the most important test results won't be available til Tuesday - which is the results that will tell if Arielle has converted to donor cells or not. They want to see at least 95% donor cells at this time.
Alanna and Matthew are here just for tonight. It's great to see them even for a short visit!
Thanks so much for prayers and well-wishes,
Love,
Priscilla & Arielle

Wednesday, April 04, 2001 at 9:38 PM (PDT)

Hello Friends and Family,
Day T +28

Another good day for us at COH. Counts continue to rise beautifully. TPN (total parental nutrition - everything one needs to eat in an IV bottle) has been decreased and turned off for 6 hours, tomorrow off for 8 hours - to help her get her appetite back. She ate 1/2 of an English Muffin with peanut butter, and some dry corn flakes tonight! Most importantly, she was able to take her most important medication - an anti-rejection drug called prograff or FK506, by mouth - so she will be able to be truly unhooked of her IV tomorrow for 8 hours! The onc said that if she can take the pill (she just did) and continue with her intake, we will most likely go to the Village by Monday. We never, ever, expected her to move along this well, I'm afraid of jinxing us! :-)

Today she had a great time with all of the other kids here (the docs must be on a roll, all of the peds kids here are doing well right now and off isolation so all can participate in group activies with the Child Life Specialist) playing bingo, was the champion and took home many nice toys... A local Brownies troop learned about Arielle and one leader and Brownie came by to see her today and brought her a large basket of presents, cards, and even got their hands on Arielle's favorite Girl Scout Cookie - a variety that was not offerred in LA so they had to contact another area to find the cookies! It's just so incredibly heart warming for Arielle and the whole family to see this outpouring here and elsewhere for our precious little one.. I'm sorry that I havn't been able to thank more of you individually via email, I can only manage a short time on the computer each day and all I seem to be able to do is read the messages to Arielle and then update this journal. Hey Heather, I promise a letter is coming to you soon!! :-)
Thanks again for your wonderful support,
Love,
Priscilla and Arielle

Tuesday, April 03, 2001 at 9:07 PM (PDT)

Day T +27

Check out the "photo" section! There are finally some pics there, although I must warn you it's a tad slow to download. I couldn't scan them to the site from my home PC, so my brother Jim helped me with it (thanks Jim). There's one photo taken shortly before Arielle got sick, (very special photo to us), I wanted to show what she looked like before this blasted disease got started! A picture of Matthew, and a pic taken in September of both girls while Arielle was undergoing treatment in Minneapolis. I can only put up 3 photos at a time, I'll post pictures of Arielle here in the hospital soon.

Today was another excellent day. A non-isolation room finally opened up, so we got to move out - our room number is now #727. This move is one move closer to getting us out the door! Today, the oncologist looked at Arielle and said she has just done so amazingly well with this transplant, and is as tough as nails. "Now, what can we do to get her out of here ASAP?" We were very happy to hear those words. It sounds like she is quite close to being discharged to the Village, just needs to increase her intake. They allow pts out of here sooner than other centers may because there is lodging right on campus, and pts are still seen daily by the oncs. The room charge is covered by insurance as it is still considered an acute care setting. So, the doctor changed one of her medicines (diflucan) to oral form, and I'm happy to say that she was able to swallow it and keep it down. This is an important milestone. She also ate 1 1/2 nilla wafer cookies and a few potatoe sticks.

WBC is up to 2,600 and platelets 54,000 - up all on their own without transfusion. So, Arielle gets to use a toothbrush tonight for the first time in over a month!! Yeah!! Absolutely no sign of graft vs host disease, which isn't a good thing - they want to see some in hopes that the new immune system will nuke the remaining ALL. We would like to see some skin rash, just enough to show s/s, but not enough to cause a significant problem.

As you can probably tell, I'm one happy camper today, and very proud of my little girl. I know that Arielle's real battle will lie in the coming month's, as the docs only give her a 20% chance of not relapsing, but to Glenn and I, our biggest fear was that she would be one of the many children who do not survive the procedure itself, and it was extremely hard for us to bring her to transplant. She has had so much chemo for so many years, we did not expect her little body to be able to withstand this new trial... She is just so strong, no little kid should have to deal with cancer, but this one really, really,really deserves to make it!!

Well, that's enough ramblings for now. Thanks for checking in!
Priscilla & Arielle

Monday, April 02, 2001 at 07:55 PM (PDT)

T Day +26

Nineteen years ago today, my son Matthew was born! I can't believe how the years have flown by! He has grown into such a terrific young man, and I'm so proud of him. Happy Birthday Matthew!

All remains well here. Her WBC is 2,300 today - with an expected drop of about 1,000, as she is off the GCSF. We did a culture around her Hickman (central line in chest) today, it has been a bit tender and the oncs think it could possibly be harboring the strep v. bacteria that she had a few weeks ago. I hope it comes back negative, if it is positive they said they would want to pull this line and give her a new one, as the bacteria can be growing into the plastic.
We should know by Weds.
It was great having Alanna here this weekend and she and Glenn returned to SLO this morning. We will miss her! I'm hoping that we can get Hope Village to bend their rules a bit when Arielle is discharged to the Village (I know I'm getting a head of things here!) and let Alanna stay with us...
But, right now, things are going well, and Arielle's liver tests have returned to normal. Still dealing with n/v, but today the onc told me that in the past, before GCSF, people would not recover from the transplant till closer to 30 days. By then, their gut had that much longer to heal itself, so people would go straight to eating. Now, people are engrafting earlier and earlier - and the gut has not had a chance to heal yet, and they haven't really come up with any new drugs to help it. So, it still takes about the same length of time to heal as before, just allowing the body to heal itself. But, she did sip 2 tablespoons of koolaid today! It's best they start with "baby steps", and take it very slow. Arielle's spirits are much improved now, she knows that if she works hard at getting well, she will be discharged much earlier than we had originally thought.
She participated in Child Life for the first time today and made an Easter basket, and walked 3 laps around the nurse's station. Everyone is so impressed to see her up and moving so well. Being such a shy little girl, she's embarrassed by all the attention! She is starting to look and act more like her old self each day. I never, ever thought she would do this well, as hard as it has been for her, it could have been much, much worse, and with all the bad luck she has had this past year, I was prepared for the worse! Thanks so much for all your prayers, I think maybe someone really is listening! :)
Love,
Priscilla

Sunday, April 01, 2001 at 05:36 PM (CDT)

Hi Everyone, Thanks so much for offering so much encouragement to Arielle. It really does help and brings a smile to her face to hear from you all!

Arielle is doing much better. Still struggling with vomiting in the evening hours, so no intake yet, but has walked the halls with Alanna and I yesterday and today. She had some real belly-laughs with her sister here, I think being with Alanna is the absolute best medicine for her! Alanna and I are getting in some much-needed "alone time" too, while Glenn stays with Arielle. All in all, a nice weekend for all!
Arielle's WBC is up to 3,100 today, but the GCSF has been discontinued so she will take a bit of a dive now. Her platelets are up to 41,000 (normal is >200,000) now, which means her marrow is producing them on there own, and the doctor thinks she may not need any more transfusions from now on!
I am dreading Friday, that is her day for a bone marrow biopsy to see what's growing there. So, I'll be asking for mucho prayers Thursday evening!
Love,
Priscilla Arielle

Friday, March 30, 2001 at 07:10 PM (PST)

Day T +23

Hi, Sorry for missing yesterday's update, my ISP's local number here in Pasadena decided to quit workng, and it took me til this evening to figure out what was going on and get a new #... And wouldn't you know it, I really, really wanted to post an update!

Arielle got her first dose of GCSF to get those darn WBC's working on Weds. Late that night, the RN personally walked Arielle's blood over to the lab to expedite things (the doctor's of course always acted that it was ok to be delayed, but the nurses were anxious)... She woke me up at 3AM to give me the great news, Arielle finally had WBC's of 800, with an ANC of 500!! This is great news. This morning at 3 AM, Irene woke me up again to let me know that it had doubled to 1600! Thank god for GCSF! Like my nurses said, it was just going on too long and Arielle needs to get off this isolation and off the drugs that she has been on.. Already, the doctor d/c's the dreaded amphotericin (aka ampho-terrible) as it is very bad for her kidneys, stopped the heparin drip that she was on to prevent VOD (my ALL_KIDS know about this condition, which can be fatal post BMT), and cut back on her TPN so that she will start to feel some sensation of hunger and thirst over the next few days...
Fortunately, the withdrawal symptoms from dilaudid has abated, although she still has diarheea.
Today she was able to work on craft activities (while in bed tho - still gets sick when she stands up) too. She can see crows, squirrels, and birds in the little park outside of her window, and believes that they are all working on nests in the trees that she can see. So, this is her big secret (don't tell anybody! :-), I'm sworn to secrecy, and as soon as she is able she wants to go hunting outside for the nests. I know this doesn't sound like much probably, but it's a big deal for her and giving her something to look forward to. The plan is, that if her counts are good tomorrow (the GCSF dose was cut in half, they don't want to elevate her WBC's too much, it's different then when we are on ordinary chemo) she will move out of isolation. Then, she can start getting her strength back and walking laps around the unit with a mask on of course. After a few days, the docs will probably let her walk around outside a bit, with an extra heavy duty mask on, as there are fungal spores in the ground and plants outside which can be very dangerous to anyone post BMT..

Arielle has been very weepy the past 2 days, crying that she wants to go home. The onc brings up a good point - he thinks this too is a sign that she's getting better. Before, she felt too lousey to even care much where she was or give it much thought, now she is thinking of home more and more...

Alanna and Glenn are on their way here for a long weekend visit. I'm hoping that Arielle will do ok without me for a bit so that I can spend some "alone time" with Alanna, of course she loves her daddy very much but lately cries if I leave the room just to go to the bathroom! I'm sure seeing her twin sister will do her a lot of good.
Thanks for visiting Arielle's webpage,
Love,
Priscilla

Wednesday, March 28, 2001 at 05:37 PM (CST)

Day T+21

Today Arielle started the GCSF to stimulate WBC production, as she still has no WBC's. Hopefully, we will see cells either Friday or Saturday. They will give her til day 28 to start producing cells, and if not, well I don't evem want to write what Arielle will have to go through next, don't even want to go there! :-(
Today was sort of a happy/sad day. Happy, because my brother Jim and his girls Jeanette and Judith came for a visit. Sad, because Arielle had problems with n/v while they were here, and then developed bad crampy diarheea. Turned out to be a bad day for her. But, it does look like we know the culpret - she is probably going through drug withdrawal symtoms. She is being weaned off dilaudid, a strong narcotic like morphine, and has been on it long enough to go through the pain of withdrawal. They would give her methadone, but she is not able to keep anything down yet. So, we gave her a small dose of dilaudid and that made her more comfortable. Looks like she may have a rough couple of days getting through this! I'll be glad to get her off of it.
Hope all is well with all of my cyber friends, and thanks for your support and prayers.
Take care,
Priscilla & Arielle

Tuesday, March 27, 2001 at 04:17 PM (PST)

Hi, Well it's day 20, no WBC's yet. So, tomorrow, unless there is a miracle in the morning labs, Arielle will start receiving neupogen. This is the drug that they would prefer not to give her as in the long run, it will mean more transfusions for her, but what can you do! As the doctor put it, every day is precious when you have no immune system, and we need to get her's revved up before another bug comes along and gives her problems. Once they start the neupogen, it will only take a few days before we should start seeing WBC's.

Otherwise, everything is ok here. Still struggling with nausea, but that's not abnormal. Our neighbor here is a 5 year old boy with relapsed ALL too like Arielle, and their church and school are doing a blood drive in his honor. They live in LA, so COH will actually go there to conduct the drive. Anyway, they are going to get lots and lots of blood and platelets donated for Zack, much more then he can use, so the Mom is asking COH to let Arielle be the sort-of co-recipient too of the drive. I thought that was very nice of her!
Thanks again for your posts,
Priscilla

Monday, March 26, 2001 at 8:15 PM (PST)

Day T + 19

Hi,
Nothing is new here yet, except that Arielle is running fevers now, but the doctors are not too concerned as yet.

The head of the ped/onc dept is on our rotation now. He is not at all concerned that it is day 19 and no WBC's. He assured me that since they have been using the protocol that Arielle was on (total body irradiation and cytoxin), no one has failed to engraft.
He is going to give her 1 or 2 more days, then consider giving her a drug that my ALL_KIDS friends are all too familiar with: GCSF (granulocyte colony stimulating factor) which will cause the WBCs to grow. He does not want to give this to her unless he has to, as it will mean a slower recovery of her RBC's and platelets, and more transfusion for her, as stem cells that would have grown into platelets or RBC's will be committed, so to speak, to becoming WBC's... So, it's a trade-off...
Anyway, just wanted to give this mini-update!
Thanks for checking in,
Priscilla

Sunday, March 25, 2001 at 02:03 PM (PST)

Hi, T +18
We had a nice visit this weekend with my sister Nancy, who stayed here at night with Arielle so I could get a good night's sleep at a local motel. Today our neighbors Chris and Ken came by too. Always a pleasure to see them! Glenn, and my other 2 kids, Matthew and Alanna, all ultimately decided to stay at home this weekend in Templeton but will be here next weekend. Glenn was ready for a break from the long drive, and with Nancy here, he didn't have to feel guilty.

Well, those gosh darn (is this a bit better, Shirley! :-) ) WBC's still have not made an appearance yet. I think we have till about day 23 before the oncs start to worry. The good thing, as they reminded me this am, is that Arielle is not fighting any infections at this point. Many people are really, really really needing the engraftment because they have an infection and it's literally life or death to get those WBC's working. Thank God, Arielle's strep blood infection is under control, so there's nothing that urgent going on.. But, it is still very anxiety provoking to not have those WBC's in the blood yet.

I think I won't update this page for a bit, unless something important comes up, until we get those WBC's and engraftment of marrow.

Thanks for checking in,
Priscilla and Arielle

Saturday, March 24, 2001 at 8:20 PM (PST)

T day +17

Where are those darn WBC's???? This is starting to get nerve-wracking.

On a happy note, Arielle ate 1/3 of a banana today, her first solid food in 3 weeks. Also, my sister, Arielle's Aunt Nancy is here for a visit, which has been great for all of us.

Hopefully, I'll have good news tomorrow!
Thanks for checking in,
Priscilla

Thursday, March 22, 2001 at 06:29 PM PST)

Hi Friends and Family,

Well, things are getting a tad boring here! The doctor said it this morning too, things are just boring! :-) But, "boring" is a very, very good place to be when you're in the BMT unit...

No WBC's yet, but nothing bad happening either. I checked her mouth this afternoon, and except for a lesion on her inner side of lip, it is all magically healed.

The onc says WBC's by weekend, for sure. I'm holding him to that prediction!
Thanks for checking in,
Priscilla and Arielle

Wednesday, March 21, 2001 at 06:58 PM PST)

Hello everyone, T +14

It's hard to believe that it's been 2 weeks already since Arielle received her new marrow. Arielle puts stickers on a kitty calendar as each day goes by, to remind her that each day passed is a day closer to getting home.
Things have been a bit sad/frightening for the family members of patients here at City of Hope, we have lost 3 patients over the past 3 days, and a 4th was just told that the marrow he had just received was contaminated, and now he is very sick with bacteria throughout his bones.. We are finding ourselves looking up at the board in the nurses station to see whose name is erased today, meaning they have either gone to ICU or have expired. It's easy to get discouraged when you see these things happening, but I'm choosing to look at the others who have beaten the odds and are long-term survivors. The walls here are lined with photos of these people, and some of the photos are VERY old! So when the other parents come up to me upset, I just say look, we know there's a signifigant risk with BMT and we are seeing its' effects, but our kids are strong and doing well, and we just have to hang onto the belief that they will be long-term survivors too.

Anyway, we need to really start doing the engraftment dance! Still no cells in her blood, but her mouth is even better today, so know the WBC's are there, just busy doing their job in the mouth! I'm hoping that tomorrow's labs will be the one!

Thanks for checking in,
Priscilla

Tuesday, March 20, 2001 at 8:39 PM (PST)

T day +13

Hello, Arielle was so happy tonight as I read to her everyone's posts. Thanks SO much everyone for your encouragement, it's like we have our own cheerleading squad out there! :-)

Everything is status quo here. No fever. Still lingering nausea and vomiting. Hopefully that will start to improve. But, nothing unusual there... Everything looks good.
No WBC's yet in the circulation, BUT, her mouth is, in my opinion, about 50% better, and the only thing that can do that is WBC's. The onc told me today it may take a couple more days to start having enough of them before the lab tests will pick them up.
She had one unit of packed red blood cells (PRBC's) today for low hemoglobin, AND her platelets are still ok, doctor says not to feel humiliated by my skimpy bag, :-), because look at how they are hanging around! Thanks, Dr. Sweetman for the morale boost!

Take care everyone,
Priscilla

Monday, March 19, 2001 at 01:03 PM (PST)

NEWS FLASH!!!
Day T + 12

Late last night, I started to notice that Arielle was talking a bit more (she hasn't been because of the discomfort and swelling). This morning, the onc made rounds and said that her mouth was looking better to him, and this can be due to only one thing: an early sign of engraftment!!
There's just no other way for mouth sores to start getting better without White Blood Cells doing their job! He said there are no WBC's in her blood yet, but that is because the few that are being produced at this time are all heading directly up to her mouth to heal it.!
Shortly after he left, Arielle said "Hey Mom, I can yawn now!!" She hasn't been able to open her mouth to yawn or smile, and now she's doing both.
We know that we still have a long way to go, but it is so important to get some of her own WBC's growing, so that she can fight infections that will continue to crop up as the weeks go by.
Now, we just have to hope and pray that she engrafts "nicely", with just the right amount of Graft Versus Host Disease (GVHD).

Thanks for all you well wishes and prayers, they seem to be helping! :-)
Take care,
Priscilla

Sunday, March 18, 2001 at 02:53 PM (PST)

Hello,
I just wanted to let everyone know that Arielle's repeat blood cultures came back negative already! The onc was very happy that she responded so quickly, as of course were we! Regardless, she will remain on all the antibiotics for the duration of this neutropenia though, until her marrow engrafts and has enough white blood cells to fight things herself. We are happy campers.
Arielle had my platelets, and like I said it was a pretty pitiful bag, and when they repeated labs it only bumped her up to 60,000, not very impressive for related donor! So my hunch, and the hunches of the nurses at the apheresis center, was right - I'm just not a great platelet donor, and will stick with whole blood. Darn, I really wanted to be able to help her platelets! :-( I bought a bottle of iron tablets today, as I also found out that I'm a tad anemic too and can't donate whole blood for a while. I'm hoping that I'll recover within about 2 weeks to start donating blood for her...
That just about covers things, she sleeps probably 20 hours out of the day, a blessing I guess!
Thanks for checking in,
Priscilla

Saturday, March 17, 2001 at 8:20 PM (PST)

Just a quick update: it looks like Arielle can stay on the clindamycin. We are predmedicating her before each dose with benadryl, and no more hives! Whew!

I donated a wimpy bag of platelets for Arielle, hope they do her some good, I don't know why but it was very slow process and they had to keep giving me calcium, only got a small bag... I think I'll stick with donating whole blood for now on! Shirley, I don't know if we'll get Glenn back over there!
Thanks for all your well-wishes and prayers,
Love,
Priscilla and Arielle

Saturday, March 17, 2001 at 8:15 AM (PST)

Hi, T Day 10
Just a quick update, Arielle may be showing early signs of developing a drug allergy to clindamycin, the drug that was started to combat her strep v. infection. We noticed some mild hives last night after her 2nd dose. I asked the nurse to premedicate her with benedryl before her next dose. This is NOT good, as according to the drug sensitivities done on her bacteria, the only drugs that are effective are 1) clindamycin, and 2) vancomycin, which the onc says he doesn't want her to have, as it is hard on the kidneys and her kidneys have already been hit really hard. So, we are really hoping and praying that it was a fluke, because she really needs to remain on the clinda.
Glenn arrived last night, and left at 7am for the blood bank. He is going to donate his platelets for Arielle. (she really needs them, her platelets were only 18,000 yesterday, normal is 250,000 - 500,000). I didn't know this til now, but it is much better for our kids to get platelets from their parents versus unrelated donors, as there is HLA on the platelets (just like with the marrow) and Glenn will match 50% of hers. So, it means the platelets will "work" better and hang around longer. I'm going to head over after to the blood bank too after Glenn gets back and donate whole blood for her.
Oh Great!! I just got a call from Glenn, they blew his vein and saline filled up his arm, so he isn't going to do platelets for her after all! Looks like I'll head over and do platelets instead of blood.

That's about it for now,
Take care,
Priscilla

Friday, March 16, 2001 at 07:11 PM (PST)

T Day +9
Hi everyone and thanks for the posts, great to hear from Arielle's friends Maurissa and Danielle, my neighbors, and my ALL-KIDS frieds.

Well, I was so sure that Arielle did not have an infection when she was running temps, she has never had a line infection since dx in 1997, well I was sadly very wrong!!! The blood cultures grew strep viridens in her blood. BTW, when I say "line" I mean the Hickman line, a permanently inplanted IV line in her chest wall which enters the superior vena cava (large vein in the neck) and enters the heart. This way, we can give her large volumes of multiple drugs at the same time.
So we added another antibiotic to the 3 she was already getting. Hopefully, she will turn around soon and this won't become a major problem.

Her mouth continues to be very painful, but fortunately the dilaudid is helping. Her face and lips are all swollen now from the sores.

Well, gotta go, looks like she's developing an allergic reaction to something... Never a dull moment!
Priscilla

Thursday, March 15, 2001 at 02:10 PM (PST)

Hi, Day +8

Hopefully we have worked out the pain control issues. The doctor ordered Arielle to have a PCA (patient controlled analgesia, if my memory serves me right!) with dilaudid. What this means is that Arielle will have a continuous infusion of dilaudid, plus she can push a button and give herself extra doses when she feels she needs it. It was so hard to see her cry with mouth pain, she's never been this way before! The doctors are very pain-control oriented and don't want her to have any pain, but sometimes it takes a while to get it "right". So she should be doing much better now on, is sleeping more each day - it's 2pm and isn't even dressed yet or gotten clean sheets (I always dress her in regular clothes during the day instead of remaining in PJ's, I think it helps them psychologically...) and the nurses say this is normal post-transplant.
Everything else is going along super, and the nurse continues to say she is absolutely "awesome"!
Thanks for checking in,
Take care,
Priscilla

Wednesday, March 14, 2001 at 935 PM (PST)

Day T +7

Hi, It's amazing that a week has gone by already since Arielle received her transplant, and we have been inpt for 17 days already. We should start seeing signs of engraftment in about 14 more days.

Arielle is till doing well. We feel so lucky and blessed thus far as she is considered "high risk" from being so heavily chemoed for so long. She is running a temp now, had blood cultures, and another antibiotic added to the arsenal of drugs to keep her well, in place of her usual immune system. It is probably just caused from the "neutropenia", or lack of white blood cells. But, it still needs to be treated just in case.

We found out last night that morphine does NOT agree with Arielle at all, she had projectile vomiting with it. This afternoon, we tried dilaudid instead, another strong narcotic. So far, so good!

So, all remains just about as well as anyone could expect right now, for which we are VERY grateful. And, we are especially grateful for all of our friends, family, and their prayers and well=wishes. Thanks again!

Hugs,
Priscilla
PS- Chris, yes Rainbow is sharing Arielle's bed and remains by her side 24/7! Everyone comments about her and loves her! :-) And to my other friend named Kris, I am still shower-deprived, no one can use Arielle's bathroom/shower but the little princess herself!

Tuesday, March 13, 2001 at 9:31 PM (CST)

Hi Friends and Family, Day T +6

Thanks everyone for visiting, and especially to my Aunt Toots and Uncle George!! And I think you guys are "Great" too!

Just a quick update, as Arielle has fallen asleep ala' morphine and benedryl, and I'm typing this right by her head!
She had a really good day today, Grandpa and Uncle Jim came for a visit and she was feeling great and in good spirits.
Clinically, everyone says she is doing great. I am SOOO grateful! (but afraid of jinxing us!!)
The mucositis flared up a bit this evening as did the vomiting, the nurse says count on the morphine drip by tomorrow for sure.
Here's some info for my ALL-KIDS friends: what is going to really make Arielle's mouth worse is the 3 doses of methotrexate they give post-BMT to help prevent early graft vs host disease. (she's had 2, tonight will be the third dose) The amazing thing is the dose is only 10mg!!! I said to the onc, come on, she's had over 800mg before and no mouth sores, how can 10mgs give her a major problem!!! He just laughed and said trust me, 10mgs will do this to her!!
I guess that's about it for now,
Take care,
Priscilla

Monday, March 12, 2001 at 07:36 PM (PST)

T Day +5

Steve posed a question on the guestbook, "how does it feel to have people praying for you all over the world??", I can answer for all of us that it feels pretty incredible! I just finished reading to Arielle the newest posts, and she and I are both so happy to hear from our friends, both old and new.

I guess I jinxed us yesterday by remarking how great Arielle was doing and that she hadn't even needed platelets yet... During the night (another sleepless night, she has her nights and days turned around, got to break this habit fast!), I kept noticing Arielle blowing her nose.. After a few hours, I finally thought, "I bet she has a bloody nose!" Sure enough she did, and petechia to go along with it. (tiny little hemorrhages, red spots on the skin - a sure sign of very, very low platelets.) Being at such a large facility here is great, within 2 hours she had a bag of platelets infusing. (My ALL-KIDS friends would appreciate this and be envious!)
She started retaining some fluids and got a dose of Lasix to help her kidneys pass the excess, again another routine deal here and the nurse was commenting on how most kids are getting this many days earlier, so it's no big deal..
Also, Arielle started with some mouth sores along her tongue. (mucositis, which is inflammation/sores that chemotherapy and irradiation cause.) To sum it up, the treatment is nuking all rapidly dividing cells ie cancer cells, well the lining of the mouth, tongue and entire gut from one end to the other are among the most rapidly dividing cells in the body. So... they suffer the consequences, and I've been told that Arielle's entire GI track has sores, that is why she has such bad diarrhea - she is sloughing off her intestinal lining.. I know this sounds pretty bad, but it's "normal". The Onc says to expect Arielle to be on a continuous Morphine drip within the next 24-48 hours as it's going to get much worse. Everyone does this. Again, not what one want's going into their little one's body, but the doc assured me that it's quite routine and won't harm her. And what is the cure for the mucositis??? Engraftment!! As soon as her new marrow starts producing sufficient white blood cells, they will heal all the sores and she'll recover quite rapidly.
Right now, she's quite happy and feeling good, watching Scooby Doo on TV. When she feels good, I feel great!
Thanks again for checking up on Arielle,
Hugs,
Priscilla

Sunday, March 11, 2001 at 04:27 PM (PST)

Hello Friends and Family,
I'm happy to report that all remains well with Arielle. No fever, all systems working great. She had her 2nd transfusion of PRBC's today, and amazingly still has some of her own platelets hanging around so hasn't needed any supplemental yet... The City of Hope goes through a phenominal amount of blood products each month, and asks for family members and friends to direct-donate blood and platelets to the patients, so Glenn, myself, and Matthew (he doesn't know about this yet! :-) will start doing this for her soon. She still has the same blood type as us, "O", but some time over the next few months will convert over to the donor's blood type, "A". Kindof strange to think about, identical twins with 2 different blood types....

We just moved, one week late, into an "isolation" room, which means there is an extra "ante" room to mask and wash your hands before entering, plus extra air filtration. The days of having to gown, glove, and really isolate pts undergoing this procedure are pretty much gone, although it will vary from institution to institution... They've done studies that show good handwashing, masks for visitors and nursing staff, and HEPA air filters are all that's truly needed. (Plus a "low bacteria" diet) We are happy to be here finally (the transplant unit has been too full for us to move til today) because Arielle now has her own shower in her room, in the regular rooms here you have to share... So our room number is now 725.

Arielle had a nice visit with her big brother Matthew and sister Alanna Friday afternoon and Sat. am, and Glenn arrived Sat. early evening. He stayed with Arielle Sat. night so I could get some much-needed sleep at Hope Village, I slept for 12 hours straight!! We also had a nice surprise visit yesterday from our neighbors Chris and Ken, who brought Arielle the most beautiful stuffed rabbit we have ever seen, and a yummy box of truffles for me!

I am still having troubles with my email, eudora closes everytime I go near it, so I can't repond to anyone here... We are so happy to hear from all of you and sorry that we can't respond to anyone individually... Thanks to all my wonderful friends at ALL-KIDS, family members, friends of family members, my friends, homeschool friends Suzanne and Lynn, neighbors, Heather & Chris, and my cousin George (haven't seen each other in 30 years! So glad to hear that Lucille is doing well!), Brandi and Shawnee who have both been here at COH, and anyone else who finds there way here.. we are so glad you guys are here for us and offering such wonderful moral support!
I guess that's about it for now, thanks for checking in.
Hugs to all,
Priscilla

Friday, March 09, 2001 at 06:19 PM (CST)

Hi!

Just a quick update, all is well with Arielle today, and the doctor seems pleased with how she is doing. He stopped her IV hydration today, so she is just getting TPN and IV meds, in other words, he wants her to start working on sips/bites so her organs don't shut down and delay discharge down the road. . . The TPN takes care of all her nutritional needs for the time being though . . .
We are anxiously awaiting the arrival of big brother Matthew and twin sister Alanna. They will sleep tonight in one of the "condos" in Hope Village and return home tommorow. . . It will be great for Arielle (and Mom too) to see our family. Should be a great day for all of us. That's all for now.

Priscilla

Thursday, March 08, 2001 at 07:24 PM (PST)

Day T +1
Thank you, thank you, thank you for your wonderful letters to Arielle and I! And a special welcome to Nancy's friends from Olympia. Thanks Nancy, for letting your friends know about Arielle's webpage.

Now, here's the update: Yes, Arielle had her marrow transfused last night, and it went off without a hitch. The Blood Bank called the nurse's station at 11:30PM (3/7) and let us know that the marrow had arrived safely and that they were processing it. They reduce it (take out the red blood cells, because the donor doesn't match her blood type and this will reduce the reaction) and who knows whatelse! to it, and then it was ready for her by 1:40AM, technically 3/8, but I was told that 3/7 will remain as "day 0" for her and today is day T +1, regardless. Arielle had already decided that her transplant was on 3/7 no matter what time it was hung, she liked that date and liked the thought of sharing her Aunt Nancy's bday! So she is "legally" getting her wish!
Anyway, the marrow is in a bag just like a transfusion, I was surprised to see that it only contained 108cc's, or less than 1/2 cup! Amazing to think that that little bag contained what is essentially Arielle's life inside!
She was premedicated to help prevent a transfusion reaction, and then it was infused over an hour. Fortunately, Glenn was able to make the 3+ hour drive up for the transfusion, then he drove back when it ended at 3AM so that he could be ready for work at 8AM! Poor guy! But we were so glad that he could make it. Arielle ended up sleeping through much of it, the benedryl knocked her out! She was kept on a monitor too to make sure there were no problems. She did great.
And today was a good day for her too. She felt good, didn't need any extra meds til tonight, played, and even did some math! (This info is for you, Nancy Major, our teacher!)

I know that to probably most people, it would seem that now the dangerous time is past, the transplant is over and was successful... If only that were true! Now is when things get tough, as she has been left with NO immune system whatsoever, until engraftment occurs - which can take a few weeks The cells she was given last night need to find their way to her marrow, and basically "grow" and start producing healthy cells - red blood cells, platelets, (which we can give to her through transfusions until her body makes their own), and most importantly White blood
cells, which we CANNOT give to her, and what makes her so vulnerable. We all have bacteria on and in our bodies that are "normal" but they can grow out of control during this time, and have to depend on antibiotics to help her, but there are some infections that we don't have effective meds for yet. In addition, the new marrow can turn around and attack her body, called graft versus host disease (GVHD) and can be either fatal, or a major long-term health problem, or hopefully, a relatively minor glitch problem in the grand scheme of things. I am hoping/praying for the latter! Plus, the side effects of the high dose chemo and Total Body Irradiation have not begun yet...

I'm not trying to sound like "doom and gloom" here, but to be honest, I just want those of you who haven't ""walked the walk" with leukemia, to know that her transplant is far from over, and your support means so much to us, so please don't quit yet!!! :-)

So please, continue to think good thoughts and pray for Arielle, because her transplant has really only just begun!
Thanks,
Priscilla

Wednesday, March 07, 2001 at 07:36 PM (PST)

Hello,
Day 0
We are anxiously awaiting Arielle's marrow, looks like it's going to be quite late so I'll have to update about it tomorrow! Glenn arrived a few hours ago, we bought a beautiful bunch of balloons for Arielle including a huge butterfly balloon that seemed symbolic to us on Arielle's "re-birthday".
I'm also happy to report that Arielle had a really good day today. She was her old self again (well, ok she still struggles with Nausea, but no vomiting today) and was able to watch tv, she discovered the "Three Stooges" on AMC and it was so good to hear her laughter. She received a bunch of cards today and really enjoyed reading them, along with your messages here on the guestbook. A good day!
Thanks for checking in,
Priscilla

Tuesday, March 06, 2001 at 07:19 PM (PST)

Hi,
First of all, I want everyone to know that I am having some difficulty with my laptop (ok Dad, yes it IS still yours!). I wanted to thank you personally via email for your notes, but when I click on your email addresses, eudora says it's illegal and shuts it down.. Very annoying! Now we are getting so many wonderful messages here, plus letters via snailmail from Make A Child Smile, that I don't think I will ever be able to catch up, once I figure out what the problem is! So to each and every one of you, if you don't get a personal thank you from Arielle and I, our humblest of thanks to you and please know how much your well-wishes are appreciated. It truly does bring a smile to all of us to hear from you!

Today is T -1, tomorrow is the big day 0! Arielle is doing ok, still struggling a bit with n&v. Tonight she gets the dreaded Amphotericin B, which is an antifungal given to everyone prophylactically. It is called "shake n bake" because it causes chills, fever, and pain. She will get tylenol and demerol before the dose is given to help with the side effects.

She has matured so much over the past 3 years. I left her alone for about 20 minutes this afternoon to pick up her mail. While I was gone, she felt nauseated so she called the nurse and asked/was given benedryl IV. A few minutes later, while all alone, she vomited anyway... She was so good, handled it very matter-of-factly, got herself up and changed her clothes which involved moving the IV pole and unclamping her clothes from the 5 IV pumps she's attached to, started to take off her sheets, then called the nurse and asked her to help her remake her bed.... This is when I walked in.. We were all so impressed, getting sick is very scarey, I even hear the adults here screaming for the nurses when they get sick because they are all alone and need comfort... But here
was my little "Bumpkins" managing quite well on her own, thank you very much! What a big girl she has become from the frightened little girl she was when diagnosed..

We are still not in the isolation room because there are none available. We should get to move out by tomorrow.
I guess that's about it for now!
Take care everyone,
Priscilla

Monday, March 05, 2001 at 9:41 PM (PST)

Day T -2

Hello, Our day of "rest" today went along pretty uneventful. Arielle got up for the first time today and participated in a craft with 2 other transplant kids in the lounge. I was really happy to see her go (had to force her, of course!). But, today will be the last day that she can leave her room, as she will most likely be going into the isolation room tomorrow as her WBC is less than 500 now, and will probably be around zero by tomorrow. Anyone entering the room must be masked now, except for me. With the adult pts, anyone staying with the pt must mask too, but with peds they let us go mask-free if we are staying here 27/7. Thank God! I can't imagine sleeping with a mask on!

Arielle did get one transfusion of packed cells today for low HGB, which will be the first of many. She is going to start Prograf tonight, which is a drug to help her new marrow engraft. She has started with diarheea, which is normal, and only got sick today once. All in all, a pretty good day!

That's about it for now.
Thanks so much for your prayers, words of encouragement, and best wishes for Arielle. I always know how to get a big smile out of her by reading her guestbook to her! :-)
Take care,
Priscilla

Monday, March 05, 2001 at 9:41 PM (PST)

Day T -2

Hello, Our day of "rest" today went along pretty uneventful. Arielle got up for the first time today and participated in a craft with 2 other transplant kids in the lounge. I was really happy to see her go (had to force her, of course!). But, today will be the last day that she can leave her room, as she will most likely be going into the isolation room tomorrow as her WBC is less than 500 now, and will probably be around zero by tomorrow. Anyone entering the room must be masked now, except for me. With the adult pts, anyone staying with the pt must mask too, but with peds they let us go mask-free if we are staying here 27/7. Thank God! I can't imagine sleeping with a mask on!

Arielle did get one transfusion of packed cells today for low HGB, which will be the first of many. She is going to start Prograf tonight, which is a drug to help her new marrow engraft. She has started with diarheea, which is normal, and only got sick today once.

That's about it for now.
Thanks so much for your prayers, words of encouragement, and best wishes for Arielle. I always know how to get a big smile out of her by reading her guestbook to her! :-)
Take care,
Priscilla

Sunday, March 04, 2001 at 05:52 PM (CST)

Day T -3

Hi Everybody, Thanks again for checking in on our little one.

Arielle just finished her 2nd and final dose of Cytoxin a few hours ago. Yea! "cytoxin" means "cell death". A nasty drug, but necessary to hopefully finish off any remaining leukemia, and take her marrow out too. I'm happy to report that we are able to control her N&V quite well now, although she stills feel nauseous, there is no active vomiting anymore. I thought the cytoxin is what would be really hard on her, but it turned out that it was the TBI that was tough!

She has been weepy from time to time because she just isn't feeling "that bad" anymore, and she thinks that must mean that the "medicine isn't working!" I keep telling her that I have heard from some people such as herself, who have experienced extra heavy chemotherapy before the transplant, that the transplant chemo is just not as bad as what they had before, and that must be the case with her!! I really think that'w what it is, she felt SO bad in Oct., Dec., and Feb. with the high dose ARA-c, fludara, and idarubicin, that this just doesn't feel quite as bad. (Trust me, she does feel lousey, too sick to watch tv or do anything but doze, but compared to before...)

We just had to d/c her decadron, which she was on to control her N&V, as her glucose shot up over 360,, and it was either dc it or start her on insulin. Tomorrow will be considered a day of "rest" on her protocol, but she will start prograf and amphotericin B,, alias shake n'bake.

Amazingly, her counts are still hanging in there with platelets >300,000 and a normal ANC. I have been assured that this will crash in the next day or so, and we will move into an isolation room at that time and we will have to wear masks.

The RN MUD coordinator, Kathy, who is picking up Arelle's marrow called the nurses station today to let us know that she is on her way to Europe. Our nurse said Kathy was VERY excited too about her "vacation" and we are all very curious about where this wonderful young woman, the donor, is from. Kathy will return Wednesday, and the transplant will be late on Weds. night.

My dh was here for 2 nights and I had the luxury of sleeping in a motel with my own shower! The little things we take for granted, like a private shower and bath... :-) Glenn took very good care of Arielle while I was gone at night, and so I know it will be ok for me to take a break on weekends, Dad CAN manage! Those of you who know us personally, will understand perfectly what I mean!! :-)

Thanks again for the wonderful words of encouragement on the guest page, both Arielle and I love hearing from you.
Take care,
Priscilla

Friday, March 02, 2001 at 04:14 PM (PST)

Hi Everyone,
Once again, I have to start out by saying how much we appreciate hearing from all of you! What did we ever do pre-internet???

Anyway, things are pretty much the same, a very sick little puppy here, sleeps all the time and wakes up occasionally to you-know-what... We've added some decadron to the arsenal of drugs to combat the N&V along with anzemet, ativan, and benedryl. I've been told that it should start getting a bit better for her, now that she has completed her last TBI!!!! Yippee!

BTW, I've been meaning to say thank you to Ben's mom and anyone else who mentioned the new drug, of the same class as kytril and zofran, for chemo-related N&V called anzemet. We had our onc in Santa Barbara try it out last month, and Arielle felt better on it. Here at City of Hope, they were not familiar with it either. But, I was very impressed how within about 24 hours of my discussing it with the onc, they had a pharmacy rep here to inservice the docs/pharmacists and got it on their formulary. So she's getting it
now. When you have severe N&V, nothing makes it go away 100%, but Arielle can tell an improvement with anzemet vs zofran. Something for you other chemo-warrior moms and dads to keep in mind! :-)

Glenn is supposed to arrive sometime tonight to take over, while I sleep in a motel and have my own personal shower! Of course, I'll stay here till the last minute, make sure Arielle's asleep/comfortable, and get back over here ASAP in the morning! Sound familiar, ladies?? I have never left her before while inpatient all these years, but I know this is going to be such a long haul it'll be too much for any one person to do it all alone.

One request for those of you out there who are inclined to pray, meditate, send out good thoughts, or whatever you do - there is a 12 year old boy out there named Yossi, has been battling this disease for about the same length of time that Arielle has, and is now in transplant at Univ of Minn for his 2nd BMT - is in very grave condition. Mom Leah is asking for people around the world to please do a good deed on his behalf, and pray etc. for him, he really needs all the help he can get right now. He is a very, very special kid!
Well, that's about all folks for now, thanks for checking in.
Take care,
Priscilla

Thursday, March 01, 2001 at 11:26 PM (CST)

Hi, T day -6
Everything is pretty much status quo here - still dealing with the N&V, but better than 2 days ago... Tomorrow will be our last day of TBI - YEAH!!! It has been very hard on her. Then it's 2 days of cytoxin, and transplant on Weds.

The nurses unhooked all the IV's for a while, and let us go outside for a bit. It was a beautiful day here in LA, and we found the lovely Japanese Gardens here on the campus. It was very rejuvinating for us both. I don't think they will allow us out of the building anymore, as they are afraid of fungal spores in the air - is this level of caution typical from any of you who have gone through transplant??

Glenn & I were thinking that our donor was probably from a place like Romania or Russia (where his grandparents were from) as stem cells are not going to be available, just "regular old" marrow. After today, I no longer think this is the case. The MUD (matched unrelated donor) coordinator, an RN, paid us a visit today, and was VERY cheerful and excited to be flying to wherever this location must be, and is in fact taking an extra day off so that she can sightsee... I don't think that many people would be elated to be going to eastern Europe these days, so now we are thinking it's probably Germany or Austria.

Arielle is the child of the month now at "make a child smile" webpage, check it out if you have the time.. PLEASE know that I'm not posting this to sollict more mail for Arielle, all of you guys here are doing enough and I wouldn't want you to do anymore than check up on her and post when you have the chance, but I do think it is a very worthwhile thing that Alexandra is doing, kids love receiving mail from other people around the world, and some of you might not know of this service and could forward the address on to others who may want to participate in some way. Plus, there is a photo of Arielle up, some of you haven't seen a pic of her before.(It's about a year old and her loose front teeth are sort of sticking out, but she wanted a photo up before she relapsed ie still with hair!) Again, this is NOT because I want you guys to send her mail, you already are, it's just FYI!! :-) The link should show up on the bottom of the page.

Take care everyone, and your support has been wonderful for all of our family,
Priscilla & Arielle

Wednesday, February 28, 2001 at 02:44 PM (pST)

T day -7
Hi, Just a quick update while Arielle catches some shut-eye before her 3rd and last TBI of the day.
I'm happy to report that today was a much better day than yesterday. Although the nausea persists and she can't eat or drink, she is feeling much better today and the zofran is holding her quite well on it's own. We even had some fun today, played catch, joked around, and when no one was looking and her IV's temporarily unhooked - we played hookey and skipped this joint for a little walk around the hospital grounds! Just a little bit of fresh air did her some good, and the smiles I saw on her face today is all I need to feel that everything is going to be ok.
Arielle also had a repeat chest CT scan today, a more detailed one, to try and find out what is causing her PFT abnormalities. Hopefully, it will be ok.
She is going to start TPN (Total Parental Nutrition- basically everything you need to eat in an IV bottle) today, a bit ahead of the normal schedule, because of her n&v and losing weight.
BTW, for those of you having miserable weather - southern California is no better!!
We are having lots of rain and gloomy skies, they even said that we have had more rain here than Seattle over the past month!
Thanks so much for checking in and saying hello to Arielle. I saved reading everyone's posts till we got here to give her something to look forward to, and she really enjoys hearing from everyone. You guys are all the best!!! :-)

Take care,
Priscilla

Tuesday, February 27, 2001 at 08:51 PM (CST)

Hi Everyone,

Thanks SO much for all the encouraging words and kindness from all of you. It is so wonderful for Arielle and I to know that so many people, from around the world, are pulling for her.

We were admitted late yesterday to the BMT unit of City of Hope. So far, things have been rough for Arielle, and I hope it will go better for her tomorrow.

We started TBI (total body irradiation) today. TBI is given fractionated nowadays, meaning in 3 divided doses, of about 12 minutes each dose - hers is scheduled for 7:30, 11:30, and 3:30 each day for 4 days.. During the TBI, she is standing on this large apparatus, hung from a harness so if she passes out, she won't fall - she's standing on a block a few feet off the ground. She has to stand perfectly still, and lead shields are in front of her lungs to protect them. Of course, she has to be in the radiation suite alone, but there is a tv monitor on her to we can keep an eye on her.

Anyway, she has gotten sicker and sicker as the day progresses from the radiation, and all she had was ativan and benadryl ordered... Need I say more?? She vomited 7 times sinc noontime, and the ??*!! nurse couldn't/didn't get up with the onc to at least get some zofran ordered. She was actually in the middle of a TBI treatment when she started vomiting too, and they had to stop the treatment, get her cleaned up, redo all of the measurements etc, and start again where we left off... I have to say the staff in the radiology dept. here has been excellent.

Finally, at 7pm tonight, she received some zofran, and is sitting up in bed doing some watercoloring. I'm a happy camper now too!

Surely the staff here will have their act together now on. I will be sure to clear things up in the am with the onc and make sure she has adequate coverage.

Anyway, this was definitely NOT a good way to start things off! Sorry for sounding so negative, but there is nothing worse than seeing your kid sick all day long, knowing there is relief out there, being at a supposedly top notch facility, and not getting any relief for her!! There, I have sounded off and feel better now.

I hope to have a better report for tomorrow!

Take care,
Priscilla

Friday, February 23, 2001 at 9:24 PM (CST)

I was hoping to start this web page with a brief history of Arielle's almost 4 year battle with Acute Lymphoblastic Leukemia (ALL), and even include a glossary explaining the terminology that I'll be using day-by-day here which may seem like a foreign language to many... But, alas, with Arielle's admission just 2 days away, it will just have to wait!

Anyway, here is what has been happening
this past week: Glenn, Arielle, Alanna
and I traveled to City of Hope on
Monday for the TBI (Total Body
Irradiation) preliminary work-up and
measurements so that the Radiologist
can make some lead-like shields to
protect her lungs, even more CT scans,
labs to repeat her HLA typing (wish I
had that glossary! :-), and the
official signing of consent forms..
I'll just sum it up by saying that it
was not an especially good day and
Glenn and I both had a strong urge to
scoop our precious daughter up in our
arms and run the heck out of there!!!

There have been some problems with
Arielle's PFT results. (pulmonary
function tests) Apparently, since
Arielle's last PFT (8/00), all of the
heavy chemo she has had to put her back
into remission has taken it's toll on
her lungs and she now has "severe"
problems with diffusion of CO2... I
guess it's like scarring or fibrosing
of the lungs...

When I mentioned this to the
radiologist at City of Hope on Monday,
he looked quite upset and knew nothing
of this abnormal test result. Come to
find out, that no one at City of Hope
knew about it, they had not received
the test results yet!! Their
pulmonologist later said that the test
results did not make a whole lot of
sense to him, as all of her other lung
capacities etc. were normal, why was
this just one part of the test so
abnormal?? So, last night, Thursday
2/22, we traveled to Santa Barbara to
repeat the tests and hope that a
different facility might get different
results...

Unfortunately, this wasn't the case, and the respiratory therapist got the
same results as our local hospital. We
are amazed by this, as she has no
shortness of breath, cough, or any
symptoms of respiratory distress, hasn't had a respiratory infection all these years... We don't
know at this time if it will delay
things, one of the transplant docs felt
that we had better do some further
investigating/treatment... (Even with the lead blocks, the TBI will nuke the lungs) We'll see, we are scheduled for
admission Monday...


My sister, Nancy, took Arielle to Santa
Barbara on Tuesday (Feb. 20) for me (I
was sick Monday night on our way home
from COH and barfed the 4 hours home!!)
to repeat a BMA (bone marrow aspiration) and LP (lumbar puncture)
while under anesthesia to make sure
that she is still in remission... (Her
BMT had been delayed due to red tape
with the National Bone Marrow
Registry, which meant Arielle had to go
back into Cottage Hospital (Santa
Barbara) Feb. 7-10th for even MORE
chemo to make sure she stays in
remission, (to not be in remission at
the time of transplant is not good, and
many facilities won't even attempt the
transplant..)

Anyway, our oncologist called us
yesterday afternoon to let us know that
Arielle's blast count(these are the
leukemic cells) had gone from 4.5% (<5%
is considered a clinical remission or
M1 marrow) to somewhere between 15-18%
(M2 marrow)... Needless to say, we
were very disappointed at this news..
Our onc said that she believes this may
just once again confirm that her
just isn't beatable with any therapy
out there today... We talked about my
fears that she will not survive the
procedure, and the doctor felt it was
time that we once again lay the cards
on the table and let Arielle know how bad things look and give her the opportunity to remain at home vs going to transplant, let it be her decision...

Well, she was 100% certain in her desire to pursue this beast with whatever it takes, and she pleaded with me to let her have the BMT! I guess this is really no big surprise, to me and the doctors it may feel that Arielle has been through so, so much and may not want to continue if the odds are slim, but she is just a "normal" kid who loves her life, even with the battles she has had to fight, and isn't even close to giving up! Plus, she was only five years old at diagnosis, and most of the first few years of treatment, she doesn't even really remember! Over the years, she has developed a real "can-do" attitude, and no matter what test or that I tell her she must have, she just smiles, and says "oh it's ok, it won't be so bad!" That approach to life is what is sustaining her now through these difficult times..

COH will continue with the transplant regardless... Our transplant doc told Glenn today that he doesn't think this number will change matters for her, if she is destined to beat this monster she will regardless of BMA result, that they do not consider this number to be a "relapse" again, and that he gives her a 20% chance of surviving this. He feels she is very strong (we KNOW this!!! She is incredible!!)and will survive the transplant itself but that the problem will be a relapse after BMT... I know that 20% doesn't sound very good to most people, but I thought that Arielle fit into the 6% category, so this sounds pretty good to us right now!!

Also, I don't believe that the 15-18% is an accurate number. I accept totally that Arielle's leukemic load had increased over the past 2 months and expected it - it was Glenn & I that were calling the oncs and saying "hey, we better do something or she won't be in remission anymore!"". But, we did this BMA a few weeks too early, ie before her bone marrow had recovered from the chemo of 10 days earlier, (to wait until the marrow has fully recovered is the "normal" procedure to get an accurate picture of what type of cells you are going to recover with. We didn't have the luxury of waiting for marrow recovery due to the close time frame) (her platelet count was only 29,000 & WBC .6 the day of BMA - normals are 250,000+ and >5). We know that we aren't going to get rid of all her ALL cells no matter what we do, but we obviously had knocked out all her "good" cells, with that hypocellular marrow the remaining blasts would appear disproportionately high... I don't know if that makes sense to you all, but it does to me! :-)

So that's about it for now, tomorrow we are going to have a combined going away party for Arielle and birthday party for Glenn, Nancy, Matthew, and Emily - all of the bdays coming up in March that Arielle will miss!

Take care everyone, Priscilla

Friday, February 23, 2001 at 11:01 PM (CST)

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