History

Saturday, April 25, 2009 4:40 PM PDT

I have been working on this update for more than two days now. In this house the interruptions are constant!

Anyway, I waited until Ivy was finished with all three medical appointments this week before updating. So…Monday she had surgery to remove her port and now she is without a central line for the first time since March 2005! This is a huge milestone for us all, though Ivy seems a little ambivalent—she had anxiety about the surgery and also about the dressing removal, even though the stitches will dissolve by themselves. Not having the port means no more racing off to spend nine hours in the ER at Children’s just because Ivy has a fever—how many times have we done that? At least 10. Ivy also got to keep the port as a souvenir of her four years battling LCH. They sent it off to pathology, as they are required to do, but we were able to retrieve it yesterday. It’s a neat contraption and Ivy is pleased with it.

Then Tuesday she had her kindergarten checkup. To my surprise she is at the 25th percentile for both height and weight. It was quite some time ago that I stopped tracking that, just being comfortable that she was gaining slowly but surely. There was a long period of time where she didn’t even make the growth chart (in fact, Juliet seems to be on that path as well!). The only thing that didn’t go so well was the vision test. I think they were testing distance vision with some kind of machine and Ivy struggled with it. The nurse asked Ivy if she was tired (it was 5 pm) and I offered that she had had surgery the day before. The nurse threw up her hands and said, “Why didn’t he mention that?!” meaning the doctor. So maybe that’s relevant…? We’ve never had any indication that Ivy can’t see well, but now we’ll be watching, and perhaps retesting.

The other bad part of the kindy checkup is that by my calculations, Ivy will need 14 shots before she’s caught up on her vaccinations. I am not looking forward to that at all! She will start catching up in June, six months after her last chemo.

Then Wednesday we headed over to UCSF for a followup at the dermatology clinic. I’m sure UC deserves their stellar reputation from a medical perspective, but overall, there is a little to be desired in the care department. Very rushed and very clinical. And not very pediatric-minded, even though we saw pediatric dermatologists. Anyway, Ivy is still having eczema, though it’s much improved. We are instructed to moisturize, moisturize, moisturize and will be trying a new prescription shampoo.

We are all strong and healthy these days! Our lives as part of a family of five are busy and chaotic much of the time, but overall, good. I was able to join Jasper’s class for a field trip to the senior center yesterday—I had a great time, but finished the day exhausted! My hat is off to J’s teacher…what a remarkable job she does, day in and day out.

Jasper lost a tooth the same week Juliet gained one. Both are growing up! Juliet is seven months old and brings daily delight to all of us. Her smiles are contagious and she is very generous with them.

As you can see it’s hard to find the time to update, but fortunately, updates aren’t necessary too often anymore. Thank you, as always, for continuing to check in here!

Love Allyson, Pete, Jasper, Ivy and Juliet

Saturday, April 4, 2009 10:23 AM CDT

Another ER visit this week, just because Ivy still has that darn port in. She had a fever Wednesday, which resulted in a NINE-AND-A-HALF HOUR visit to CHO's ER. The previous ER record was eight hours, on Christmas Eve 2005. Ultimately she was diagnosed with an ear infection, but they still had to treat with the big-gun antibiotics, because of the possibility of a line infection. Anyway, she's fine.

What this experience did though, was to push me to push Dr. T to schedule the port removal surgery, which he is now doing. So Ivy will see Dr. T next Friday for her regular monthly checkup (though it's been longer than a month) and that appointment will double as the pre-surgery physical (let's hope her lingering cough has cleared up by then). So we might be looking at port removal as early as April 13th! This is another milestone--Ivy has had central line access since March 2005, when her first Broviac was placed. It's also worth noting that, other than the steroid cream prescribed for her "eczematous" rash, Ivy is completely off all meds, for the first time since March 2005. That's a great feeling (for her too, I'm sure!).

Despite the 9.5 hours at CHO on Wednesday, we had to go back Thursday to have the one little stitch from the skin biopsy removed. Ivy was given the choice of having someone in the ER do it or making a special trip to clinic and she opted for clinic--it definitely wasn't my first choice, but every once in a while we let Ivy be the one to make the call when it comes to her medical care.

That's the news from here...

Love Allyson, Pete, Jasper, Ivy and Juliet

PS: Caringbridge did some updates and now my apostrophes appear as question marks...frustrating. Sorry!

Wednesday, March 25, 2009 7:33 AM PDT

It's not LCH!!! Actually, we were pretty sure it wasn't, but it was great to have it confirmed. They are calling it "eczematous," which is what they called a similar rash that Ivy had two years ago. To me, it sounds like a non-diagnosis, but we will be treating it like eczema--baths, topical steroids, lots and lots of Aquaphor. The rash on her body seems a little better, but her scalp is horrendous. We will be using something called Dermasmooth on it.

Anyway, we are happy!

The transition back to work has been okay. Juliet seems to like her nanny well enough, greeting her on Day 2 with big smiles. That's a huge relief for me. She is six months old now and is still the most perfect baby one could ever hope for (translation: she sleeps all night!).

Happy Spring!

Love Allyson, Pete, Jasper, Ivy and Juliet

Tuesday, March 17, 2009 10:29 AM PDT

We had a rough time at the UCSF dermatology clinic yesterday. Ivy's appointment was for 3:15, we arrived at 3:05, but did not see a doc until after 4 pm. And not just one doctor, but four of them! First a resident, then a fellow, then the main doc, then somebody else who introduced herself as "part of the team," who I'm pretty sure was a student (or maybe a resident). The first resident was actually from CHO--she is doing a rotation through pediatric dermatology at UCSF.

The biggest problem was that Ivy simply would not cooperate. She wouldn't take her clothes off, wouldn't do anything they asked at all. So the four docs did their best to conduct an exam, with the patient's mother alternating between sternness and pleading (to no avail).

Ultimately it was decided that a biopsy was needed. With Ivy's history they couldn't take a chance that the rash is not LCH, even though it sure is behaving differently than her original rash four and a half years ago. Even though I knew it was coming I felt like I was going to cry--how could we possibly get Ivy to cooperate with a biopsy when she couldn't even get on board with a simple exam? In the end, it was worse than I anticipated...I asked for something to calm Ivy down, so they brought in Valium, but Ivy wouldn't go for it. So I laid down with her on top of me (restraining her of course), and while she screamed bloody murder in my right ear (still ringing), they took a punch biopsy from her back. In the meantime the CHO resident had taken a screaming Juliet down the hall and Jasper quietly watched Madagascar on the portable DVD player they had brought in. Horrible, horrible experience.

We'll have results in a week or two, but in the meantime I am stressing about the one stitch in Ivy's back--how are we going to get it out when she won't let any medical personnel near her?

The rash is worse than ever, by the way. Aquaphor seems to help temporarily, but I suspect, LCH or not, they will be prescribing steroids to treat it.

Must go...Juliet is fussing.

Thanks for reading.

love Allyson, Pete, Jasper, Ivy and Juliet

Friday, March 6, 2009 10:35 AM PST

Sunday, March 8---FERRITIN UPDATE
Dr. T was neither surprised nor concerned about the ferritin level being so high. Evidently the number of transfusions that Ivy's had (more than 20!) can cause that, even two years later. And according to the nurse, 700 isn't even that high. Whew!

Of course, we couldn't get out of February without SOMETHING strange going on with Ivy...she has a rash all over her body. She's had it for over three weeks now and it started on her face, around her right eye. It's pretty scary-looking and if Ivy were any older she would be very self-conscious about it. It now covers her face, goes down her neck, behind her ears, at the nape of her neck and then lightens considerably as it goes down her body. Some of it is very itchy, some not at all. Also her scalp looks terrible-- a cross between bad dandruff and cradle cap. Of course, the scalp and behind the ears are classic LCH locations, so we can't help but worry.

We saw Dr. T on Wednesday and he was mystified also. Other than the rash, though, Ivy is fine (except for a lingering cold). She gained three-quarters of a pound in a month. All of her blood work is normal except for a VERY high ferritin level (700, when 10-150 is normal). I'm not sure what this means and even my friend Google didn't help me out too much. I am waiting for a call back from the nurse who will speak to Dr. T about the implications of the ferritin level.

So we are discontinuing the Bactrim (slight chance this is what is causing the rash) and Ivy has an appointment with the ped derm at UCSF on March 16th. Frustrating that we have to wait that long. A skin biopsy is probably in her future, poor baby. Enough already!

Other than that, though we are doing well. Ivy and Jasper are doing great in school--not to brag too much, but Jasper is in the top of his class in both reading and math. Juliet continues to be a very sweet and mellow baby. Jasper is the one who can make her laugh, and when she laughs, we all laugh. I am gearing up to go back to work in a couple weeks--the nanny search is excruciating!

Perhaps I'll update after I learn more about the ferritin levels...thanks for reading!

love Allyson, Pete, Jasper, Ivy, and Juliet

Thursday, February 5, 2009 8:31 AM PST

Yesterday we had an appointment in a department at CHO that we had never visited before--orthopedics--but it was for Jasper, not Ivy!

It turns out that Jasper has a broken foot. Two weekends ago we went on a snow trip (had a GREAT time) and Jasper sledded into a tree. I didn't witness it, thank goodness. He limped around a bit, but he is known for his high pain tolerance, so he continued to play soccer, run, climb, pogostick and all of his other normal, very active pasttimes. But this past Monday he was still limping (nine days after the accident) so I took him for an xray. On Tuesday evening our pediatrician left a message, sounding very surprised that there was indeed a fracture. He said Jasper would need a cast and crutches. Ay ay ay!

So we saw the orthopedist yesterday, who determined that the fracture is not in the same area as the pain and swelling. He said the cast was optional, that it helps with pain, but since Jasper didn't seem to be in pain from the fracture, he could skip it. He also said we don't need to limit his activities--Jasper could be the judge of that. Anyway, it is a huge relief! Jasper is a very active boy, and crutches would really cramp his style. So now we just wait for everything to heal itself.

Immediately after Jasper's appointment, we headed upstairs for Ivy's clinic appointment. She is doing very well. All of her bloodwork is normal and she's growing quite well too. February is a month that causes us anxiety--after all, it was Feb. 8, 2005 that Ivy was first diagnosed, then Feb. 14, 2007 that she was admitted to the hospital with her horrible relapse. Last February she was in the hospital with pneumonia. Fingers crossed that this February is uneventful...

Juliet is fine as well. She is a delightful four-month-old who has wide-mouthed grins for almost everyone she meets. She is, by far, the easiest baby I've had. We are all crazy in love with her.

Thanks for continuing to follow Ivy's story. I, for one, am very happy that it's a BORING story these days!

love Allyson, Pete, Jasper, Ivy, and Juliet

Thursday, January 1, 2009 12:32 PST

2008 was a much better year for us than 2007. And that is quite an understatement!

In 2008: Ivy finished chemo, Jasper learned to read, Juliet was born, Ivy started preschool, we had our Make-A-Wish trip to Disney World, and I turned 40 (not sure this qualifies as a good thing, but it is a milestone!). And Pete? Well, Pete carried on as usual, being a terrific dad and working hard for us all.

Don't get me wrong, we had our share of hardship in 2008 also. Mostly it was Ivy who suffered--she was so very sick with pneumocystic pneumonia in May. That was a very scary time for all of us, but what a glorious day when we learned the diagnosis and knew that it would respond to treatment! Then there were her two leg surgeries for aspergillus--very traumatic for her. Then throw in a couple more hospitalizations for fever and neutropenia, and there you have the makings of a difficult year. And yet, compared to 2007, it was a breeze.

Ivy had a brief clinic appointment yesterday, for a port flush and labs. Her bloodwork looks perfect. Even her test for c. diff came back negative, so I'm guessing it's the voriconazole causing the diarrhea. We hope to be off that med next week after meeting with the Infectious Disease doc. Last week Ivy saw the surgeon, who said the surgical site was healing nicely and she was free to take a bath! So, all in all, Ivy is doing great. What a wonderful way to start the new year!

While at the hospital pharmacy last week we met a dad whose four-year-old daughter Raven has HLH, the most challenging form of histiocytosis. It's even more rare than LCH, but here we were, two histiocytosis parents sitting in the same pharmacy, each shocked that the other was familiar with our child's disease. Raven is about to undergo a bone marrow transplant (the only treatment for HLH)--she has a long and difficult journey ahead of her. We hope 2009 brings a cure to Raven.

Happy new year, everyone! (And if you were wondering, yes, we all stayed up past midnight last night, even Juliet!)

love Allyson, Pete, Jasper, Ivy and Juliet

Saturday, December 20, 2008 10:28 AM PST

~~!~~!~~! DONE WITH CHEMO !~~!~~!~~

Holy gosh! Can it really be true? Yesterday Dr. T gave us the best Christmas present by saying that he didn't think we needed to continue chemo! She's done!

He acknowledged that nobody knows the right answer as to whether it's time to stop or not. So, since we haven't seen any signs of histio, AND since Ivy's had such odd opportunistic infections due to her compromised immune system, we may as well stop now. It's been a full year of maintenance chemo, minus the skipped weeks here and there.

So Ivy didn't get poked at all yesterday, much to her delight. The odd spot on her port site looks much better and Dr. T said ending the Cephlex was fine (we had completed the full course on Wednesday). We didn't check labs either, but since they've been fine lately, he thought we could skip that as well.

So Ivy will be seen monthly, for labs and a port flush and a quick exam. The port may come out in three or four months' time. Weekend Bactrim will continue for three months.

After seeing Dr. T, we headed down to see Dr. H, the Infectious Disease doc. She said Ivy should continue the voriconazole until the surgery site is healed and can be evaluated a little better. Have I mentioned how expensive that drug is? $45 copay, for a two-week supply! Without insurance, it costs about $3000 for two weeks! The micafungen is definitely cheaper (like free!) but the side effects were bad, and the method of delivery not so convenient (nightly hour-long infusion, port accessed 24/7). So we'll take the vori.

Ivy will see the surgeon on Christmas Eve, just to look at the surgery site.

So yes, we are really pleased to be done with chemo, but the memories of two years ago are very fresh. Remember, Ivy finished chemo almost two years ago to the day, then ten weeks later relapsed worse than anyone ever expected. So our three-and-a-half-month stay on 5 South began. Ugh. But we are still hopeful...

Merry, merry Christmas and Happy Hanukkah to our loyal readers. We are celebrating the season!

love Allyson, Pete, Jasper, Ivy and Juliet

Wednesday, December 10, 2008 4:51 PM PST

Arggghhh. More frustration. Ivy did not get re-accessed today...no pokes=no chemo. The reason for this is that the nurse did not like the look of a little teeny tiny bump on Ivy's port site. So she called in another nurse and then the doc to check it out. Also Ivy was freaking out every time they tried to examine it--it was painful to the touch.

They are thinking there might be some little infection there and did not want to risk poking it with a needle. So that means no chemo and also no micafungen at home. And because no chemo, that means she can be back on the Voriconizole, instead of the mica. They are also putting her on Cephlex for the skin thing. There is a good chance the Cephlex will cause c. diff, so we left clinic with a stool sample kit (better to be prepared!).

We are extremely disappointed. Just when we are getting one thing resolved (aspergillus), another pops up. Just when we are finishing up meds, another one or three gets added to the schedule.

Oh, and they didn't seem certain that this is the very last vinblastine either. Next week, on Friday, we will meet with Dr. T. He will have the final say on whether this is the last chemo. We will also meet with the infectious disease doc--who will have the final say on whether Ivy can stop the antifungal meds. Gosh, we sure hope so.

Enough already!

love Allyson, Pete, Jasper, Ivy and Juliet

Monday, December 8, 2008 11:54 AM PST

Surgery's done--we were home by 11 am. Ivy was very anxious beforehand, but is now happy and relaxed. They put a cute heart-shaped gauze dressing over the site--very sweet. The stitches will dissolve by themselves, thank goodness, because the worst part of the last surgery was taking the packing out. No packing this time!

I assume the last cycle of chemo will begin on Wednesday. Then we have our annual holiday party at CHO on Friday evening. We always look forward to seeing our hospital friends there and hope for good updates from all of them.

Thanks for checking in!

love Allyson, Pete, Jasper, Ivy and Juliet

Thursday, December 4, 2008 8:05 AM PST

Six hours at CHO yesterday, with a short break in the middle to rush over to Jasper's school to have cupcakes with his class, because he turned 7 yesterday!

We started off in the oncology clinic for labs (all good), then down to Infectious Disease, then to meet with the surgeon.

Ivy's been having a rough time lately. Ever since her tummy bug of six weeks ago she's not been able to get back to 100%. She's had several more episodes of vomiting, three nosebleeds, cough, lots of fatigue (asking to go to bed at 7 pm), losing weight because she hardly eats, an earache two nights in a row with subsequent (temporary) hearing loss, etc, etc, etc...Not a well child.

So we finally looked up the side effects of micafungen and found that most of these ailments could theoretically be linked to that (except for the earache and cough). We thought for sure the ID doc would say to discontinue the mica, but NO! She thinks it's working a little bit and we're not sure if she thinks the side effects are manageable or if she thinks they are not caused by the mica...anyway, Ivy does not get a respite from it.

Also, the aspergillus lesion on Ivy's leg finally came to a head and drained itself. But the fact is, it's still there and so she will be having surgery on Monday to eliminate it once and for all. Then she will probably be on the mica for a bit longer just to be sure the aspergillus is GONE.

Ivy did not get chemo yesterday because they want to be sure she is not neutropenic for the surgery. So I think she will get it on Wednesday and I am pretty sure that will be the LAST vinblastine (!!!). We have been non-compliant with the at-home chemo because Ivy's tummy is so sensitive--if she gags even a little bit everything comes right back up. Dr. G didn't seem too bothered by that.

So poor Ivy...still dealing with A LOT of medical issues for a 4-year-old. At her parent-teacher conference last week, her teacher remarked on her resilience. Everyone who knows Ivy comments on this. She's one tough chick.

Jasper, besides turning seven, is doing great. At his parent-teacher conference I was told he is reading above grade level and doing so well in math that his teacher gives him extra work. Also, she said she enjoys having him in class. We can't help but be proud of him!

And little Juliet...well, she's doing fine as well. Still teeny, but growing at her own slow pace. Lots of smiles and she's a great sleeper. We couldn't have gotten a better baby!

We had a nice Thanksgiving in Visalia with Uncle Chris, cousin Stephen and Nana, then raced back to Oakland for a second one with Pete's family.

Juliet is starting to fuss--off I go.

love Allyson, Pete, Jasper, Ivy and Juliet

Thursday, November 13, 2008 1:31 PM PST

Juliet's napping in the swing (the "neglectomatic" as Pete calls it), so I have a few moments to update.

Unfortunately the ID doc put Ivy back on the micafungen, saying that it is at least not letting the aspergillus proliferate. I did not point out that it was kept in check all summer long with NO meds. The doc said that some people are on micafungen for YEARS! Not Ivy, we hope...when she finishes chemo in 6 weeks, that should speed things along.

Ivy did indeed get her vinblastine yesterday. She was quite listless yesterday but perked up later in the day. She threw up her methotrexate so we didn't even bother with the 6-mp. Her tummy is still sensitive and it seems any little thing can set off vomiting (though not prednisone, Oreos, or soy sausage--go figure).

Her liver enzymes are slightly elevated. Dr. G said this is from the tummy virus, not chemo (since Ivy's been off it for a week) and not the micafungen. They will recheck next week. Her hemoglobin was as high as it's ever been--13.2. ANC around 1300, I believe.

Dr. T is in talks with the surgeons; they are deciding whether a general surgeon or a plastic surgeon should cut out the lesion on Ivy's leg. I'll update when Ivy gets a surgery date. Otherwise we are fine here. Jasper has been playing soccer this fall and loving it. His last game is on Saturday.

Thanks for reading!

love Allyson, Pete, Jasper, Ivy and Juliet

Tuesday, November 11, 2008 10:10 AM PST

Again, apologies for the long delays between updates, but with a new baby and a temperamental computer, it's almost impossible to get an update done!

Ivy is under the weather these days...two weeks ago she had a fever/ER incident. That resolved quickly and easily, thank goodness. Last week she had a "24-hour" tummy virus, but she still seems to be fighting it--lots of listlessness and complaints of a bellyache, but no vomiting since Sunday evening. Pete had the same virus, but his resolved in the normal 24-hour period. That's the difference between a normal immune system and one that's been compromised for four years, I guess.

We stopped the micafungen, without doctor's orders, because it clearly is NOT working on that lesion on Ivy's shin (also we were wondering if it was contributing to her general malaise). Dr. T, after seeing Ivy yesterday, agreed there was no need to continue the med. Ivy will see the Infectious Disease doc tomorrow and Dr. T is pretty certain another surgery is in Ivy's future. He said the intent of the last surgery was not to eradicate the lesion, but rather to biopsy and culture it. This time they would go in deeper and wider and really try to clear it out, since two very tough meds have not touched it.

Ivy is due for vinblastine tomorrow, the second-to-last dose! Her counts have been fine, so I don't see any reason why she won't receive it tomorrow.

I just learned of another baby who lost her battle with LCH--a grim reminder that we are not out of the woods necessarily, and that this disease will continue to kill as long as we cannot find a cure. We did not do Hike for a Cure this year (seeing as how Juliet was four days old!), but we will next year. Raising money to find a cure for histiocytosis is a priority for us!

love Allyson, Pete, Jasper, Ivy and Juliet

Tuesday, November 11, 2008 10:10 AM PST

Thursday, October 23, 2008 11:13 PM PDT

Yesterday was one of those very challenging days...first a dead battery in the van, then a baby who wouldn't stop crying unless she was nursing, then bad news about Ivy's aspergillus infection on her shin, then a looooong wait for Ivy's lab results, then rush, rush, rushing to pick up Jasper from school on time (not to mention no time for lunch!). Oh, and Juliet had had a not-so-great night the night before so I was tired as well.

It looks like the spot on Ivy's shin is still infected with aspergillus, despite the incision and drainage surgery and a couple of months on voriconazole, so the Infectious Disease doc (who has a niece named Juliette!) is switching meds to micafungen (sp?). It's a second-line defense against aspergillus and has fewer med interactions than the vori. Fewer side effects too, I think. But the MAJOR problem with it is that it is an I.V. drug and Ivy will be on it for at least one month. So what this means is that her port will be continually accessed and we somehow have to find the time in our hectic day to hook her up to an infusion pump for an hour. All the docs and nurses, when discussing this with me, had looks of chagrin and compassion on their faces--at least they get how very challenging this will be with a newborn at home.

We are so done with the medical complications for Ivy! Talk about being burned out...And Ivy is very, very sad about having to be continually accessed and being hooked up to a pump every day. That poor little girl needs a break!

Ivy's ANC turned out to be much higher than it has been in recent months--2800! So she got her vinblastine yesterday and the piece of good news from clinic is that she only has two more vinblastine appointments to go! So we are looking at nine more weeks of treatment and if I've calculated correctly, her very last chemo dose will be Christmas Eve! I'm afraid to get too excited, but boy, will it be nice to let Ivy's little body get used to being med-free and disease-free.

Otherwise we are all fine. We are going through the normal adjustment period of having a baby in the house--it's not easy, but it's normal. That's good enough for us! Juliet will be one month old tomorrow. She's still a tiny girl, maybe about 6.5 lbs now. She smiles a bit and can hold up her heavy head for a few seconds here and there. Ivy and Jasper still seem to like her a lot.

Thanks for checking in...

love Allyson, Pete, Jasper, Ivy and Juliet

Monday, October 13, 2008 9:48 AM PDT

With apologies for the delay, we are thrilled to announce the arrival of Juliet Lois, born by scheduled c-section (due to placenta previa) on September 24, 2008, at 6:51 pm. She is a tiny girl (maybe also due to placenta previa), weighing 5 lbs, 11 oz, and 19.5 (I think) inches long. She looks a lot like Jasper.

Jasper and Ivy are delighted with their sister, taking turns holding her and singing to her when she starts to fuss.

Mom (that's me) is recovering well.

Since this is Ivy's webpage, here is a little update about her too. She is loving preschool and embracing every little virus that comes her way! It seems she's had a non-stop runny nose for a month now. She continues with her anti-fungal med for the aspergillus in her shin. Also continuing chemo, on and off, since her counts seem to take a periodic nosedive. We can't wait until she's done with chemo!

Jasper is doing fine, enjoying first grade (one of the better readers in his class) and LOVING soccer! He's getting a flu shot this morning (a sacrifice for his sister Ivy) and is really excited about getting to use Ivy's EMLA cream to numb up his arm. He's odd that way.

We are all adjusting to being a family of five. Pete is back at work and I am nursing around the clock, it seems. Yes, it's all coming back to me now...it's been more than four years since we had a newborn in the house, but I am starting to recall how tedious/thrilling/tiring/joyful it all is.

love Allyson, Pete, Jasper, Ivy and Juliet

PS: I accidentally deleted many of my email contacts. If you did not receive an email announcement of Juliet's birth and think you should have, please send me your email address!

Sunday, September 14, 2008 9:26 PM PDT

UPDATE----MONDAY, 2 PM

We are home! Ivy wanted to go to school right from the hospital, but she will go tomorrow!

Well. We've spent the last 26 hours in the hospital, but not to welcome a new baby into our family. Instead we are at CHO, because Ivy had a fever last night. I do believe it was her highest fever ever, 104.5 when Pete got her to the ER around 7 pm. Her ANC was just over 500 so they admitted her.

As of very early this morning her ANC had risen to over 700 and the fevers stayed away, so maybe, just MAYBE, if I beg and plead and explain that we have a baby coming next week, they might let us go home tomorrow. That's only if her ANC keeps rising and she doesn't get any more fevers. She was in fine shape today, eating, playing, talking and even going outside to the hospital playground for a bit, so we are not too terribly worried. Both Pete and Jasper have been fighting a little virus and Ivy certainly has viral symptoms (runny nose, slight cough).

(And no, the baby does not have a name yet--this is the first question everyone asks, but some of you may remember that Jasper was nameless for an entire week after his birth. That's just how we do it around here.)

Thanks for checking in...let's hope the next update will be announcing that Ivy is home!

love Allyson, Pete, Jasper and Ivy

Wednesday, September 10, 2008 10:17 AM PDT

I have had no time to sit down and update lately...the cultures from Ivy's leg lesion grew aspergillus, which is a fungus. This would be very serious were it in her lungs, but in her skin, not so much. At first the Infectious Disease doc didn't even see the need for treatment, but Dr. T expressed his concern that Ivy is chronically immuno-suppressed and had already suffered a bout of pneumocystis pneumonia, so the plan was changed. It would be terrible if the aspergillus were to spread--a chance we cannot take. Although it's good to note that her little immunocompromised body did an excellent job of "walling off" the aspergillus in her leg.

One issue is that the anti-fungal med, voriconazole, is hard-core and not really compatible with vinblastine (and yes, it was me who caught this, not the ID doc!). So Ivy will skip the voricon for two days before and after the vinblastine. The treatment could last as long as a few months, but I hope not.

We had to take the packing out of the biopsy site over the weekend, which was horrible, just horrible. Ivy screamed and kicked and I ended up quite angry with the surgeons for putting a little four-year-old girl through this. Surely they can find a better way...The biopsy site is a deep gouge in her shin, but according to Dr. T it is better to leave it open (covered with a bandaid) than to seal it up and let bacteria and fungus fester inside.

Dr. T commented that he's learned an awful lot from Ivy over the years. I had wondered about this, if everything she's been through is typical of a pediatric chemo patient and he said no, they are seeing things with her that they don't usually see. But he also noted that most kids are not on chemo for almost four solid years, so some of this is bound to happen to a little body under so much stress.

And by the way, the biopsy was negative for LCH, which we expected, but Dr. T said since they were in there carving her up anyway, we may as well be 100 percent certain.

Ivy is LOVING preschool and yesterday received a sweet note from one of her teachers, saying that Ivy is "a happy, cooperative, well-adjusted girl," which of course, we already knew!

I have finally stopped working which is a relief--I was getting very tired (not to mention how much time I was spending at CHO lately). The baby might be coming next week, or she might not be. What was complete placenta previa is now marginal, and that could change things. Yes, things are still crazy around here.

Maybe the next time you check this page, there will be a new baby in our family. Or maybe there won't be!

love Allyson, Pete, Jasper and Ivy

Wednesday, September 3, 2008 6:56 PM PDT

Sorry no updates in awhile, but we have been quite busy, and thankfully, there has not been much to update! Ivy had a minor surgery today, to lance that odd lesion on her leg. It hadn't gone away, after about two months, and yesterday we noticed that her shin had some swelling also. With the impending birth, it was decided (and pushed for by me) that we couldn't wait to see a dermatologist at UCSF and that CHO had to offer something in the meantime. Voila, surgery less than 24 hours later.

They also xrayed her leg yesterday--written at the top of the form was "rule out bone involvement," which made my heart skip a beat. I have not been concerned that any of this was LCH, but with the swelling, well, one never knows. Today we found out that the xray showed her bone to be FINE.

So anyway, they drained the swelling and the surgeon reported that it looked like a chronic infectious process with some necrosis (yuck). They are culturing whatever stuff they got out of it and got a biopsy as well.

Ivy is also neutropenic (ANC=570), which makes surgery riskier, but we really had to get in there to figure out what's going on. So no chemo for her this week. We go back next Tuesday for labs and maybe chemo. Also, we go back this Friday to have the packing removed from her surgery site. Not to mention my many appointments...Ay ay ay.

Dr. T said even with the low ANC, Ivy should have her first day at school tomorrow, which made her very happy. She is so excited! Jasper started first grade last week and is happy too. Another busy year coming our way!

Thanks for reading!

love Allyson, Pete, Jasper and Ivy

Wednesday, August 13, 2008 5:41 PM PDT

Yesterday was a long, crazy, exhausting day, at least for a seven-months-pregnant lady carting around two children. First, Ivy had clinic to recheck her ANC. It has come up, to about 1200. Then there was confusion about whether she should get chemo or not—was it meant for her to skip this cycle entirely, or to start late? Then, there was concern about the lesion on her leg. The clindamycin did not help much, so there was conferring among doctors about how seriously to take it, knowing that we are hoping to avoid oral antibiotics. Ultimately, it was decided that upping the Bactrim dose should help (Bactrim is an excellent antibiotic for skin infections and we already know that it has not lead to c. diff for Ivy in the past).

Finally it was decided that Ivy would start the next cycle of chemo, but I had an ultrasound scheduled for 1 pm, so they said to go do that, then come back for chemo and pharmacy. Luckily the ultrasound place and CHO are less than ½ mile from each other.

There was good news and bad news from the ultrasound. The bad news is that I still have complete placenta previa, so it is seeming very likely that a c-section will be scheduled for sometime in late September. The good news is that the baby is fine, and is measuring very average for her gestational age. Perfect! I go for another ultrasound in four weeks and may have to have an amnio at that time to check for lung maturity.

Then, after these medical appointments we headed over to Ivy’s preschool for another trial run (only half an hour late!). The teachers were amazed that she had come directly from receiving chemo, watching her climb and run and swing and be engaged in Circle Time and Tea Time. I am really happy for Ivy, that she finally is getting to do normal kid stuff. I hope her transition to preschool is painless!

Finally, we arrived home around 5:30, only to finish last-minute packing so that Pete could drive the kids to their beach vacation with Grammie, Grampa, Beth, Harvey, Emma and Rose. This will be the longest I’ve been away from my kids—five whole nights! I am missing them, but at the same time, I let out a big sigh of relief when they departed around 7:15 last night. Then I ate a big bowl of Rocky Road while I watched the Olympics with a cat on my lap. A perfect ending to a hectic day…

Love Allyson, Pete, Jasper and Ivy

Thursday, August 7, 2008 7:47 PM PDT

Ivy had clinic today, but was not able to get chemo due to her still low ANC (in the 600's). So she'll be off all drugs except the Bactrim until maybe Tuesday, when we recheck her counts. This makes us and her happy, but it shouldn't, because all it means is that we are putting off the end of treatment. We are already 2-3 weeks behind (I'm losing track), so she'll probably still be on chemo at Christmas. Her hemoglobin, platelets and chemistries are all fine.

For about two weeks now Ivy's had a strange, inflamed-looking boil-type thing on her leg. Obviously, staph was the first thing that popped into my mind, so we watched it closely until today when Dr. F could take a look at it. He put her on topical Clindamycin after I told him I was worried that another round of Cephlex would bring the c. diff right back (Cephlex is one of the better drugs for skin infections, but is known to lead to c. diff). It's always a balancing act.

We ran into the other LCH patient today (there are actually a few, but D is the only one we've met). It was nice chatting with her and her grandmother. All are in agreement that LCH is one sneaky beast! We also briefly said hello to a family we know from 5 South and I saw another one's name on the sign-in sheet. It's great to know they are now being seen on an outpatient basis, just like Ivy. That means they are doing well!

Ivy had a trial run at the preschool she will be starting in a few weeks. It's Jasper's alma mater, so we know she will be in good hands. Jasper and I were with her the entire time, so it's hard to get an idea of how the first day will really go. But Ivy is REALLY excited and so, so ready for this next big adventure.

Our summer is drawing to a close (so soon?!) so we are trying to cram in more fun before it's too late. We spent Sunday at the Santa Cruz Boardwalk, which was fabulous except that it resulted in food poisoning for me. I am too embarrassed to tell you what I ate that caused it...well, okay, it was a fried Twinkie. Yuck. Never again.

Thanks for reading!

love Allyson, Pete, Jasper and Ivy

Monday, July 28, 2008 12:27 PM PDT

Ivy continues to amaze us—this weekend she demonstrated her swimming skills. Despite not ever having been in a swimming pool until this past year because of her Broviac, she can swim! I don’t know where or how she learned, but there she goes, dogpaddling around the pool! Not only that, but she jumps in off the steps, brings herself back up to the surface, turns herself around and dogpaddles back to the steps. She also loves to jump off the diving board, though in this case, she wears her floaty suit. Still, she only just turned four, but she is fearless!

I took her in to clinic last week, to recheck her ANC. It had come up a bit, to just over 1,000, so the assumption is that it will continue to rise until she gets her next vinblastine in 10 days. Ivy’s really doing well these days. And so are we!

Thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Monday, July 21, 2008 2:29 PM PDT

Jasper did not get to go to Camp Okizu last week…it was evacuated the week before due to wildfire, so that week’s campers arrived on Monday, only to be sent home on Tuesday. Jasper may have an opportunity to go later in the summer, but we are still trying figure out if our schedule can accommodate camp. He is disappointed for sure, but luckily he has enough summer fun planned to keep him occupied—including a Giants game with the Make-A-Wish Foundation on Wednesday. Anyway, we are just relieved that the camp didn’t burn—from maps online it looked as though the fire was only a mile away!

So all three of us were at clinic on Thursday. Ivy’s ANC was barely high enough to get chemo (needs to be 750, hers was 790), so they want to recheck her counts in a week, just to make sure it’s rising and not sinking (monocytes were high, indicating that neutrophils are on their way up—info for the medically-minded among you). Ivy is fighting a cold, though it seems very minor at this point, only a slightly runny nose.

Thursday was also the very last day of vancomycin for the c. diff! That was almost eight weeks of antibiotic treatment, so we hope we have eradicated it finally. They want to see two clear stool samples this week, so even though this week was supposed to be an “off” week in terms of CHO, we will be there at least twice. Between Ivy and her issues and me and my prenatal things, we are hitting up our insurance every single week. Last week we received a statement from Blue Shield stating that Ivy’s 10 day hospital stay for PCP cost over $72,000!!! We don’t have to pay a cent of it, thank goodness, but I still gasp in horror when I see something like that. What about all those people without insurance?

I am now in the last trimester of my last pregnancy, but I have to admit I’m not savoring it. My litany of complaints is no different from any other pregnant woman, so I’ll spare you. The only thing of interest is placenta previa, which is when the placenta is covering the cervix, thereby blocking the baby’s exit. Cure=c-section. This condition puts me in the high-risk category, even though I was already there due to my “advanced maternal age.” There’s a chance the placenta previa will go away as the uterus grows, but in the meantime, I am working hard to convince myself of all the positives associated with scheduled c-sections. They will continue to monitor the placenta via ultrasound.

Anyway, that’s our medical update! We are having typical Bay Area summer weather—cold and gray. The four of us huddled around cups of hot chocolate yesterday, that’s what kind of day it was.

Thanks for reading!

Love Allyson, Pete, Jasper and Ivy

Monday, July 7, 2008 5:19 PM PDT

Ivy had a follow-up appointment with the pulmonologist, Dr. Zee, today. Her lungs are in great shape and so is she! We talked about how shocked ALL of the docs were to find pneumocystis pneumonia in Ivy. In fact, Dr. Zee said when he got the pathology report he had to run down to the lab to see the stains for himself—he just couldn’t believe it. The reason they were all so surprised was that Ivy was on prophylactic Bactrim for this very infection (all chemo patients are) and also that she didn’t have the rapid decline expected for this illness (most likely due to the benefit from Bactrim, of course). Anyway, this just makes it more clear to me that we have topnotch doctors on Ivy’s team—they cast a wide net and didn’t narrow the field of differential diagnoses too soon. We are so lucky to have them!

Ivy finally got to have her birthday party at Fairyland on Saturday. It was a good party and I for one, am relieved that it’s over! We also had a fun 4th of July, starting with a block party and ending with fireworks in Moraga. Jasper is enrolled in gymnastics camp this week and I am curious to hear how his first day went (I’m trying to set my biases aside, but I think Jasper could aim for the Olympics!). Next week he leaves for Camp Okizu—six nights away from us—eek! And so the days of our summer march on…

Thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Friday, June 27, 2008 5:22 PM PDT

Ivy had clinic yesterday. Jasper was with us, which hasn’t happened lately, because usually he’s in school. Ivy loved having him there and everybody exclaimed at how big both kids are getting. Jasper was barely three when we started at clinic and Ivy, of course, was only an infant. They remember when she was just learning to walk!

It was crowded in clinic yesterday so they gave us a bed in the Day Hospital, which turned out to be much more pleasant—TV, free lunch, a bed to lounge on, and hugs from the Day Hospital nurses whom we haven’t seen since the end of last summer. Unfortunately, Ivy’s port, for the first time ever, did not cooperate with the blood draw so she had to have an I.V. in her hand. So the poor girl had to suffer through two pokes. Afterward she said the port poke is preferable to the hand, even though they put EMLA cream on it. She got to pick a toy from the toybox for her ordeal.

Dr. Torkildson was the clinic doc yesterday, which is not too common these days. He was thrilled to see how great Ivy’s doing. I made a point of thanking him for his excellent doctoring during Ivy’s latest trauma/drama (pneumocystis pneumonia and c. diff) and found myself blushing as I did so. But he really is an excellent doctor—you can just tell he’s always thinking.

Ivy’s gained all her weight back and then some—she’s now just over 31 lbs. But she gained three pounds in three weeks! She’s been eating a lot; she’ll eat her food, then gobble up Jasper’s leftovers.

How happy and relieved we are to be starting Ivy’s fifth year with her in such good form!

Our trip to Southern California was short and fun. We highly recommend Legoland to those with kids age 10 and under. It’s a sweet and charming place, and not very Disney-fied. The histio meeting was good, but Pete and I are far beyond the level of information offered—basically it’s Histio 101 and we should be studying Histio 836 or something like that. But one piece of information I came away with was that the government has no interest in funding research for these orphan diseases, so it really is up to us, the families and friends, to fund it. We knew this, of course, and that’s why we hit you up every year for Hike for a Cure, which is THE MOST SUCCESSFUL histio fundraiser ever—close to $600,000 raised in seven years! But this is small potatoes compared to the $30 million given by the feds to pediatric cancer research in ONE year. (Not that this money is enough either—thousands of children are killed by cancer every year.) Anyway, not to get morbid on you, but even though we can’t hike this year (baby due that same week!) we will still be asking you to donate in honor of Ivy. More to come on that later…

Thank you for taking the time to read my ramblings…and for continuing to support us and Ivy through this years-long ordeal.

Love Allyson, Pete, Jasper and Ivy

Thursday, June 19, 2008 4:20 PM PDT

Ivy turned four on Father’s Day and she woke up insisting she was taller and heavier than when she went to bed. She received her gift from her parents the day before—a little kitty named June (see the photo page). June is a dream kitten, playful and purry, and even Jack is starting to warm up to her (by comparison, he seems huge and grizzled, but he’s only three years old!).

Ivy finished treatment for the PCP pneumonia a week ago and will complete the steroid taper tomorrow morning. Her appetite is ENORMOUS! The vanco for the c. diff will continue through the middle of July. And of course, chemo continues until November or December. She’s doing really well at the moment—full of energy and happiness, delighted at turning four. With each birthday she reaches we feel as though we’ve witnessed a minor miracle...we’ve spent the past three and half years fighting hard and holding our breath. We’re still doing that, but the older she gets, the better her prognosis.

We head out tomorrow for a short trip to Southern California. There is a histiocytosis conference at the Children’s Hospital of Orange County, plus a reception for Hike for a Cure. Then we will meet up with cousins at Legoland for a whirlwind visit and day of fun. Summer begins!

Love Allyson, Pete, Jasper and Ivy

Monday, June 9, 2008 5:16 PM PDT

Yes, we made it out of CHO on Friday, and no, we did not get to see the Pixar movie (fine by me—I was ready to be home!). Getting out of there was a little more challenging than I had anticipated, due to, you guessed it, insurance! Evidently, oral vancomycin is just not done and the insurance company initially refused to cover it. We have been so very fortunate that CHO does our insurance haggling for us, so once again, all I had to do was wait patiently for it to be resolved.

So now Ivy is on the most complicated medication schedule I have ever seen. She’s on two chemo drugs, two antibiotics, and prednisone, some once a day, some twice a day and some three times a day. Oh yeah, both the vanco and prednisone require a taper, so that makes the schedule even more complicated. She will be on the vanco until the middle of July.

But Ivy is back to her spunky self so we know the meds are doing their magic. She even participated in her dance recital on Saturday. Despite not having been in class for several weeks, she got up on stage in front of hundreds of people and danced her little heart out. I am her mom, but I’m not the only one who said she was the best in her group. Two separate opportunistic infections couldn’t keep this girl down!

We are settling back into home life, gratefully. It is Jasper’s last week of kindergarten! He has had a wonderful school year and I am impressed with how much he’s learned in nine months—he reads! He writes! He does addition! He can count by twos, fives and tens! He can tell you what a noun is!

We are having lovely summery weather to match our lovely summery moods…so happy to be able to enjoy it!

Love Allyson, Pete, Jasper and Ivy

Thursday, June 5, 2008 10:30 AM PDT

Ivy is still doing great. She’s eating almost like a normal kid these days (not like a normal PERSON, but like a normal KID—you know, bacon, brownies, pieces of turkey, one strawberry). They’ve cut her TPN way back and she started the oral vancomycin yesterday. She threw a fit, but later said it didn’t taste like anything. She also had her first BM in five days and it looked very normal.

She got off the pole yesterday for a few hours, so we went outside. She was thrilled to be out of her room and we were thrilled to see her RUNNING, something we haven’t seen in weeks (because she couldn’t get enough oxygen into those little lungs—or maybe because the lungs weren’t doing a very good job of oxygenating the blood).

The plan today is to start up Ivy’s chemo again. She’s had a two-week break, but we can’t get complacent about that old LCH now…

We’re now in a shared room, with a teeny tiny baby, but at least we have the window side. Yesterday Ivy was visited by two different musicians, including one who remembered from last year that Ivy’s favorite song is Baby Beluga. We also got to visit with a therapist dog. Evidently they are here every week, but this is the first time we’ve known about it. Tomorrow Pixar is coming. They pre-release all their movies here, so lucky little CHO patients get to see their movies before the general public does. I don’t know what their new movie is, but I think it’s likely we’ll be going home tomorrow anyway (!!!).

And I think that’s it…thanks for reading and seeing us through this latest roller coaster ride.

Love Allyson, Pete, Jasper and Ivy

Tuesday, June 3, 2008 2:31 PM PDT

Well, I'm happy to say that our biggest problem is that we're bored out of our minds...Ivy is doing GREAT! It's amazing how frightened we were last week and then to have her issues be so easily resolved, well, it's just amazing.

Dr. T was just here and he said we could be out of here by the weekend. He is cutting Ivy's TPN back to 16 hours since she's doing an okay job eating. All her meds will have to be switched to oral and that will be the challenge. She'll be taking a LOT of Bactrim (she doesn't mind the taste, luckily) and prednisone every day (another one she doesn't mind). But she does hate the Flagyl, so we are going to try oral Vancomycin to treat the c. diff. It's not common to give it orally, so nobody is too sure what it tastes like. Ivy will be finding out tomorrow.

Also, Ivy has been off the oxygen all day and her sats are hanging out in the low to mid-90's (at the moment, 98 percent!). She's really doing well. I really feel like we dodged a bullet--it would be horrifying if after three months of "big gun" chemo last year her LCH was back. Thank goodness it's not that.

So, hopefully, these updates will just get more and more mundane!

love Allyson, Pete, Jasper and Ivy

Sunday, June 1, 2008 8:57 PM PDT

Ivy has improved dramatically and we are so relieved. Yesterday she was feeling well enough to be grumpy and bossy, and today she was feeling well enough to be happy and silly (our old Ivy!).

She's on TPN but she's also eating (mostly junk, but we'll take it for now). She hasn't vomited since Friday. She still requires continuous oxygen, but evidently that's normal for this stage of treatment. I'm hoping to take her outside tomorrow for a short time, but I will need an assistant--even if I weren't pregnant, I couldn't carry Ivy, and manage both her I.V. pole and oxygen tank at the same time (the tank is only when she's on the move; otherwise she's tethered to the wall).

We will be in the hospital for another two weeks, if all goes as planned. We are very hopeful that she will be out by her fourth birthday, June 15th (also Father's Day this year). She will miss her birthday party which was to be at Fairyland on June 8, but they are allowing us to reschedule (how could they not?!). She will also miss her dance recital this Saturday. I had to skip Jasper's last tball game today, so I could stay with Ivy--these things are disappointing for sure, but if that's the trade-off for Ivy being well, we'll take it.

We are in a much better place than we were a week ago or even three days ago! To not be dealing with LCH again is a HUGE relief.

Thanks for checking in on our girl!

love Allyson, Pete, Jasper and Ivy

Friday, May 30, 2008 9:00 PM PDT

WE DODGED A BULLET!!! Ivy has PNEUMONIA!!! Dr. T came in for the second visit of the day to say very mildly, "We have a diagnosis." Neither of us is very demonstrative but we hugged! Several minutes later the pulmonologists came in grinning ear to ear. I would have hugged them too, but I didn't want Dr. T to get jealous.

So what Ivy has is PCP, pneumocystis carinii pneumonia, which is also known by a newer name that I can't spell or pronounce. This is the kind of pneumonia that is most famous for killing AIDS patients. It is also why Ivy takes Bactrim on the weekends prophylactically. So it's serious, but we have no reason to believe that the more intensive dosing of Bactrim and the addition of prednisone won't take care of it.

The PCP diagnosis does not explain the diarrhea and vomiting, however. C. diff doesn't usually cause vomiting either. So we may actually be looking at three separate diagnoses, which is funny because doctors are trained to tie all the symptoms together into one diagnosis--leave it to Ivy to make that virtually impossible!

They are putting Ivy on TPN (I.V. nutrition) tonight because what little she's eating is coming right back up. She is wasting away, though the I.V. prednisone kick-started her appetite (the question is whether the cupcake and spaghetti will stay down).

As you can imagine, the mood in room 5323 was celebratory tonight (yay, pneumonia!). Dr. T said not to expect a quick turnaround for her, but we are happy to take it day by day. No lung biopsy for Ivy! No scary chemo known to cause secondary malignancies either! Joy!

Thanks to everyone for your words and actions of support.

love Allyson, Pete, Jasper and Ivy

Thursday, May 29, 2008 10:41 PM PDT

I'll try to do a quick synopsis of today before I go to bed...

Ivy is very, very sick. There's just no other way to say it. She seems to be deteriorating. Today she lay in bed with her oxygen mask on, not talking, not wanting to engage in anything at all for hours. She's eating very little and vomited three times in about 14 hours. She's also having diarrhea despite being on the Flagyl.

She did perk up this evening though and ate a bit (never mind that it came right back up). She managed a few smiles too and even a little silliness as Jasper and I were leaving tonight.

Dr. T came in around 5:30 to say that the stain results hadn't come back yet. I know he's really hoping for a positive LCH stain so we can avoid the biopsy and begin treatment right away. Pete and I don't know what to hope for. There doesn't seem to be any "good" diagnosis for Ivy's lung problems. It's a choice between bad and worse, I think.

Pete has spoken with Dr. McClain in Texas and Dr. T said he would be in contact with him too. We are hoping that by putting those two great minds together they can come up with a stupendous and effective treatment plan.

We also found out that Ivy is in the isolation room due to her c. diff--it's not required, but definitely preferred. The bad news is that because of the infection, they prohibit visitors under the age of 10, so we've had people arrive at the hospital only to be turned away (of course, almost all of our friends have young children!). This is not good for Ivy; she's sad enough as it is.

We expect more of the same tomorrow, other than getting the news about the stains. Thanks for all the nice messages in the guestbook.

love Allyson, Pete, Jasper and Ivy

Thursday, May 29, 2008 7:49 AM PDT

Ivy had her bronchoscopy yesterday and it went very well. It was extra risky for her to have anesthesia because of her breathing issues, but the docs weighed the benefits vs. risks and decided that ultimately, Ivy would only get worse before she gets better, so this might be our only window of opportunity to get some much-needed information. Signing the consent form was agonizing and handing her off to the anesthesiologist in the OR even worse, but Ivy sailed through. In fact, Dr. Z (the pulmonologist) said it went better than expected. He also said her lungs look red and inflamed, but that's what he expected to see.

They sent off the slides to be stained for LCH and took many different kinds of cultures. We may find out about the LCH stains as early as today. But don't forget, with this kind of test a negative result could very well be a false negative (in terms of LCH).

Both the oncologists and the pulmonologists are thinking we are dealing with LCH in her lungs, despite the CT not having that "classic" appearance. Dr. T came to speak with us twice yesterday and made it clear that he's already been doing his research on what next possible treatments we have for Ivy (and we are getting to the bottom of the list). In fact, he came to see her a couple hours after the bronch and was visibly relieved to see her back in her room--there was a chance she'd go to the PICU on a vent. Yes, we were scared yesterday.

She's been eating and drinking a tiny bit. No more vomiting and much less coughing (weird!). But her pulse ox is not great--around 90 percent without oxygen, and she is completely lethargic. They ran her blood gases in the ER and they were totally normal. This is great news but I'm still learning the physiology of it all (what exactly does that mean?).

Ivy ran a fever last night, but Dr. Z said it might happen after the bronch, so we were not too concerned.

I'm sure I'm forgetting a lot, but I've got to get Jasper off to school and then myself to the hospital so Pete can get to work. I'm sure we'll be in the hospital at least a week, so come on down! You know how we like visitors.

Ah yes, one bright spot: they moved Ivy into an isolation room, so we have our own room! It's a room we've had many times, with a view of the helipad. They are doing it to be nice to us--Ivy has no need for isolation right now.

Thanks for checking in...it was one year ago this week that we were released from 5 South for the last time. Hard to believe we're still on this awful roller coaster.

love Allyson, Pete, Jasper and Ivy

Wednesday, May 28, 2008 8:03 AM PDT

Jasper and I overslept but here's a quick update: Ivy was admitted to CHO yesterday. Her pulse oxygen was only in the low 90's, sometimes dipping lower, so she's been on continuous oxygen. They talked about putting her in ICU, but after observing her, they could see she wasn't in an acute situation, so she's in a tiny shared room on 5 East(yuck!).

Pete just called to say she's NPO, and that they are trying to get the bronchoscopy done today, which was one reason for admitting her, to speed that along.

At Tumor Board, they didn't really figure anything out...Ivy's CT looks a little bit worse than it did a year ago, but nobody knows what's going on there.

More later...

love Allyson, Pete, Jasper and Ivy

Tuesday, May 27, 2008 12:44 PM PDT

Ivy and I are off to the ER at CHO. I called in to clinic to tell them how sick she still is and despite them taking her case to Tumor Board at this very moment, I was advised to bring her in. Maybe they want another set of eyes on her, since her symptoms, taken all together, seem so mysterious to everyone.

We did get a positive for the c. diff, which is good news of a sort. It explains some of her symptoms anyway, though not the most concerning ones regarding her breathing and coughing. So I presume they will start antibiotics in the ER. And maybe they will admit her.

Through the long weekend Ivy continued to cough, throw up, pant, and be lethargic. Obviously, she needs some medical attention.

I will update when I know more...

love Allyson, Pete, Jasper and Ivy

Friday, May 23, 2008 8:53 PM PDT

Oh boy, lots of information to process tonight…yesterday Ivy had clinic but Dr. F decided to hold chemo and steroids so the pulmonary doc could have a slightly more “unblemished” look at her. Her counts were excellent. Her white count was so high that they didn’t even bother to calculate the ANC—totally normal. Hemoglobin was 12.4, as high as it’s ever been, I think. And despite the frequent stools and vomiting she is not dehydrated. We brought in a stool sample this morning on our way to CT, but it will be a few days before we hear anything. In the meantime, the vomiting has gotten worse and now to me, it really seems like a viral thing. Her cough might be slightly better, but it’s hard to say with all the vomiting (is the coughing making her vomit, or is that separate?).

So we started our day with a CT of the lungs and sinuses (because of all the nasal congestion). For the first time, Ivy did it without sedation. Wow! This is a huge accomplishment and makes our life easier—no more having to schedule an anesthesiologist for CT (which can add weeks to the scheduling time) and no more hours spent in the recovery room afterward. She even had to get an I.V. in her hand for the contrast and she did GREAT! I couldn’t be in the CT room because of the pregnancy, so Ivy had Daddy and Grammie with her.

Then we had our consult with Dr. Z, the pulmonologist. Basically, Ivy’s lungs are “not normal.” But they don’t have the classic LCH look to them, nor do they have the classic asthma appearance. I think he said they are more consistent with some kind of infection, but he thought if she had an opportunistic infection she’d be much sicker. So the summary? He doesn’t know! The next step for Ivy will be a bronchoscopy, on June 13th. She had one of these in fall 2005 and it turned up nothing. He also spoke of a lung biopsy which is very invasive and we have tried hard to avoid that. But it may be time.

Then we headed back to the oncology clinic to find out if Ivy would get her chemo today. Dr. F said no, that they were taking these latest CT findings to Tumor Board on Tuesday and would figure out next steps. So Ivy gets a little break which is nice, but really, we’d prefer that nothing rock this chemo boat.

So we end this day feeling frustrated, scared and sad. Why does poor Ivy have to keep having these setbacks? We have been dealing with stuff like this for 3 ½ years now. We, and she, need a break! Will she ever be able to go one month without a medical appointment of some kind?

Sorry this update is jumbled…I’m trying to get a handle on all of it myself.

Love Allyson, Pete, Jasper and Ivy

Wednesday, May 21, 2008 5:10 PM PDT

The baby’s ultrasound shows that she is still a girl and perfect in every measurable way. She shares a resemblance to Jasper, at least in terms of grainy ultrasound imaging. There is an issue with the placenta, which is called marginal placenta previa. There is a 10% chance it could result in c-section, but at this point it’s way too early to worry about that.

So now we can focus all of our worry on Ivy, who seems to be very deserving of it. Her cough has gotten worse along with her many other symptoms (symptoms of what, we don’t know). Our wonderful pediatrician got that pulmonary referral going, so quickly that the pulmonologist himself left a message last week saying that Ivy would be seen by him this Friday at noon. The Pulmicort is not helping as much as it should be, nor is the albuterol (though it seems to have some effect). Ivy wakes up 1-3 times a night with a coughing fit that leaves her crying and gagging. In many ways it’s like having a newborn with all that night waking, but at least with the newborn, you know it’s completely normal. Whatever’s going on with Ivy is not normal.

Her other symptoms include: lack of appetite/weight loss, lethargy, loose and frequent stools. I suppose it could be a common virus. But the worst part is not knowing and I know that after her oncology appointment tomorrow and her pulmonary appointment on Friday, we still won’t know what’s going on with her. We are hoping that tomorrow’s bloodwork looks good and that the pulmonologist says all of this is consistent with virus/asthma.

I will update, if not after tomorrow’s appointment, then after Friday’s. Thanks for checking in on our girl.

Love Allyson, Pete, Jasper and Ivy

Thursday, May 15, 2008 5:10 PM PDT

I got fed up waiting for the pulmonary referral, so yesterday I called one of the nurses at clinic to say that Ivy was getting worse and how long would we have to wait? She said a visit to the ER or our pediatrician was in order.

A scheduled appointment with Dr. King is much preferable to several hours in the ER so Ivy was seen by her pediatrician for the first time in years. Of course, while we were there her breathing was fine, no coughing, no panting, no wheezing, etc. He was a little baffled about why we were there, I think.

But he sent us on our way with a prescription for Pulmicort so we will try that. He also said he would try to get the pulmonary referral going too ("it's the least I could do"). Somehow Dr. King is better at the pediatric aspect of medicine than many of the docs at CHO. Ivy always warms to him quickly (and Jasper too, on the rare occasion that he's seen him!).

My Mother's Day was sweet and mellow. My kids are at the cute age where every single celebration is exciting to them, so they bounded out of bed to bring me breakfast in bed and eagerly watched me open cards and gifts. Jasper kept saying, "Mama, you're the king today!" It was a huge contrast to last Mother's Day where we had an ice cream party in Ivy's room at CHO and then finished off the night with Ivy becoming septic. I still can't believe how far we've come--it's been close to a year since Ivy finished 2-cda/Ara-C and we spent all those months on 5 South.

Speaking of 2-cda/Ara-C, I've been in touch with another mom whose son will be starting that protocol. It's a rare path to take with LCH and a very scary one. I have no doubt that Ivy is the only patient at CHO ever to have done it. So needless to say, this mom is worried, but she thanked me IN CAPITAL LETTERS for keeping this Caringbridge page--evidently it reassured her that they are choosing the right path for their little boy. Anyway, it's nice to know that my record-keeping/blathering away is helpful to a few people!

It's exceptionally hot here today, maybe even 100 degrees. Many of you know how unusual that is for Oakland! And in our uninsulated upstairs, it's probably 110 degrees. The baby's kicking away and I will be 20 weeks along tomorrow! The big ultrasound is scheduled for Tuesday.

And that's all the news from O-town.

love Allyson, Pete, Jasper and Ivy

PS: Oops, forgot to mention--new photos, a random assortment from the last 6 months or so.

Tuesday, May 6, 2008 11:01 PM PDT

Our weekend at Camp Okizu was rave-worthy, as always, though I spent much of the time seeking reassurance from the counselors that six-year-olds do just fine at SIBS camp. Every last one of them told me that almost all the six-year-olds do better than their parents expect and have a fabulous time. So Jasper will be going to sleepaway camp this summer, for a whole week! He is really excited about it. I do think he will be fine—he is such an adaptable kid who enjoys new activities and likes people (even though he’s on the shy side). I can’t think of a better first sleepaway camp experience than Camp Okizu. What a place!

Ivy continues to cough, but I think it was slightly improved at camp. She’s also having some poop issues, as in increased frequency (up to five times a day, though it’s not terribly loose). We are trying to force probiotics down her throat, but she resists. For now we watch and wait.

Thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Friday, May 2, 2008 1:12 PM PDT

Ivy’s counts yesterday were all fine (ANC of 4000+!!!), so she got her chemo as planned. But her cough is TERRIBLE and Dr. G heard something in her lower left lung, so Ivy had an xray too. We didn’t hear the results until this morning, but essentially the report says there is a little “thickening” in the area. No pneumonia. “Thickening” means inflammation, I guess, which could be asthma, of course. But the high dose of prednisone that she’s on should be treating the asthma and it doesn’t seem to be…so that’s a little mysterious. Ivy is being referred to pulmonary. I suspect they will want a CT scan and I’m not happy about that, mostly due to the amount of radiation involved, but also it’s just a major pain with a three-year-old.

While at the hospital we ran into one of our 5 South friends and got bad news about two of our old pals-- Enrique, who despite the perfectly matched bone marrow transplant from his sister, relapsed and is now at the very end of his horrible journey, and Josh, who also relapsed and is about to begin prep for transplant (a journey we hope to never have to embark upon). So much sadness up on that floor…just a reminder of how very fortunate we are.

We are even more fortunate that we are free to be out in the world and take advantage of all it has to offer, like Camp Okizu. We are hoping to be on the road in one hour, but the more I think about it, the more unlikely that seems! Off to pack!

Thanks for checking in…

Love Allyson, Pete, Jasper and Ivy

Thursday, April 24, 2008 7:32 PM PDT

Ivy and Jasper saw the dentist today--Ivy's first time ever. She had to take one dose of amoxicillin as a prophylactic, in case bacteria entered her bloodstream through her gums. I was very pleased with the dentist, as he was aware of LCH and knew it could cause dental problems. He didn't know that Ivy had LCH before we showed up there; all he knew was that she was on chemo, so it's not like he did a quick Google search on Langerhans cell histiocytosis. Anyway, I'm happy to report that both kids' teeth and gums are in great shape!

Ivy's cough is terrible. She asks for her albuterol a couple times a day and says that it helps. So maybe her next specialist appointment will be with an allergist to find out what her triggers are. Today she was a bit droopy and tired, though she perked up after we picked up Jasper from school. It's so hard to know what's going on with her!

Tomorrow I depart for a girls' weekend in Chicago--very excited about that! I'm sure Pete and the kids will enjoy their time too. It's a different vibe when Mama's not around!

Next weekend we depart for Camp Okizu. We wanted to go Memorial Day weekend, but there was no room left. So we'll settle for next weekend. Every day Jasper asks how many days until we go. We are all looking forward to the long drive in our new (to us) Odyssey! Why is our little family switching from a trusty little Civic to a gas-guzzling minivan, you ask? Well, to accomodate a family of five, which we will be, come October. That's right, we're crazy, and we've decided to make Ivy a middle child! Anyway, Ivy and Jasper will have a new little sister this year. (Oh my gosh, what were we thinking?!)

Until next time,

love Allyson, Pete, Jasper and Ivy

Friday, April 11, 2008 5:10 PM PDT

See the previous entry for a breathless description of Ivy's Wish trip to Florida...as you can see, I've added some photos. We have probably hundreds more.

Ivy had clinic with chemo yesterday, so we are back on the chemo-and-steroids wagon, much to her dismay. Her cough, which was gradually getting better before the trip, and disappeared almost completely while in Florida, has come back with a vengeance. It's a dry, barky cough and kept three out of four of us up for much of the night last night. The current thinking is allergies (allergic to something in California that is not in Florida), but yesterday she started her prednisone pulse, which should calm down any allergic reactions, unless maybe it doesn't act that quickly? I don't know.

I found out after the fact that my radio interview aired yesterday morning on 107.7. The woman at CHO coordinating the radiothon said she cried driving to work listening to it. Too bad we missed it! Of course, what really matters is that the interview compelled listeners to donate, but I don't know if that happened either!

That's all the news from here...we are looking forward to a warm weekend, much needed by me after a perfect weather week in Florida. Spring seems to be slow in coming this year. Jasper has a Little League game early tomorrow, then maybe we'll spend some time unpacking. Eww.

love Allyson, Pete, Jasper and Ivy

Tuesday, April 8, 2008 9:37 AM PDT

It was really hard leaving Florida, because we had an absolutely fabulous and fun time there! Starting from the moment we were picked up in a limo on Monday morning we were treated like royalty. We arrived at Give Kids the World at midnight, where we were greeted with a sandwich dinner and a bag full of gifts and snacks. Give Kids the World is the “hotel” where Wish kids stay and it is a magical place. We had a 2-bedroom/2-bath villa with washer and dryer and full kitchen. GKTW has swimming pools, a merry-go-round, train ride, miniature golf, pony rides, a castle and more. Unfortunately, we were so busy visiting Disneyworld, Sea World and Universal Studios that we didn’t have time to explore all of GKTW.

Every night when we came in there were more gifts for the kids—DVDs, stuffies, comic books and other small toys. They have Christmas every Thursday night so we saw Santa Claus too! We had all of our breakfasts in the Gingerbread House. There is an ice cream parlor open all day where you can eat all the ice cream you desire. The first day we went there I ordered a root beer float, Ivy wanted chocolate ice cream with colored sprinkles and Jasper ordered…water. Crazy kid.

Mickey Mouse, Minnie Mouse, Goofy, Pluto and Belle came to GKTW so the kids got some special time with them (and autographs!).

At all of the theme parks we didn’t have to wait in lines for the attractions or character greetings—this was probably the biggest benefit of all. So Jasper and Ivy filled their autograph books and we have tons of photos of the many characters with our kids. It turns out that both kids are fearless when it comes to roller coasters (though Ivy was too short for many of them) and also when it comes to rides that little kids are supposed to be afraid of, like Snow White and the Haunted Mansion.

Anyway, I could go on and on raving about this trip. We are so fortunate that we had this opportunity. We keep trying to explain to the kids that most people’s trips to Disneyworld/Land are not like this, that most people spend much of their time waiting in line (75 minutes to meet Cinderella!).

If you are ever in search of a charity to support, I strongly recommend Give Kids the World and the Make-A-Wish Foundation. If you are ever looking for a volunteer opportunity and want to make a trip to Florida, you could offer your services to Give Kids the World—they have about 150 paid staff and THOUSANDS of volunteers each year.

We had a wonderful time. Ivy stayed well. It was awesome!

Now we are back to work, school and medical appointments. Ah well, real life.

We have a lot of photos to share. I’ll try to get around to that this week.

Love Allyson, Pete, Jasper and Ivy

Friday, March 21, 2008 5:03 PM PDT

Ivy had clinic yesterday—mostly anticlimactic, which is good. Her counts are fine; ANC of about 1700. Platelets and hemoglobin are within normal range. Ivy has finally reached 30 lbs! I doubt she’s even on the growth charts these days, but we are happy to see her make that milestone.

Ivy is a rashy girl and she’s got another one going on. One theory is that it was caused by her amoxicillin. Evidently the “’cillins” can cause rashes that are not necessarily allergic. This type of rash (urticaria) should have cleared up by now, but you know, it’s Ivy we’re talking about. It’s itchy, but it’s much improved since it started about a month ago.

So in prep for the big Disneyworld trip coming up in 10 days, Ivy will have another clinic appointment to check the rash, check counts, and confirm that she will skip her 6-mp starting next Thursday and continuing throughout our trip. The 6-mp is the most immuno-suppressive of her meds and also the most annoying by far, because she has to take it every day at bedtime on an empty stomach. I understand there is an ice cream parlor at Give Kids the World, which is where we’ll be staying, and we’d hate to deprive her of a bedtime snack!

Tuesday will be another eventful day…in the morning I will be interviewed as part of a fundraiser for Children’s Hospital. It will be broadcast on the radio sometime in April, but I can’t recall which radio station. When I find out I will let you know! Then, Tuesday evening, our wish grantors will be coming over to officially “grant” Ivy’s wish. I think this entails gifts for Ivy and giving us our actual itinerary. I can’t believe this trip is only 10 days away!

And in case you missed the announcement earlier in the week, Jasper and Ivy have a new cousin—Rose Elizabeth was born to Beth, Harvey and Emma on Tuesday! Since the hospital is only three blocks away we stroll over there many times a day to admire her. They should be coming home today.

Love Allyson, Pete, Jasper and Ivy

Wednesday, March 19, 2008 1:01 PM PDT

The newest member of our family is Rose Elizabeth, born to Beth, Harvey and Emma yesterday morning. She's a big and healthy girl and we are so excited! Happy birthday, Rose!

Wednesday, March 12, 2008 5:17 PM PDT

Just a quick update—we ran Ivy’s labs yesterday and they are in pretty good shape. Her hemoglobin and platelets are within normal range. Her white count is low, which is “normal” when you’re on daily chemo. Her ANC is 1270, low but still offering a decent amount of protection. Normally we’ve only been checking labs every three weeks, on the day she gets her vinblastine, but with the exceptionally low ANC from the last few weeks I thought it prudent to check mid-course. I still will be pushing for lightening up on the chemo for the 10 days leading up to our trip (which is less than three weeks away!!!!!).

So all is fine for now! Jasper started T-ball last week and my jaw about hit the floor when I saw how handsome he looks in his uniform. Somehow, he looks very grown up but gosh-darn cute at the same time. One of these days I’ll get around to uploading some new pictures (seeing as how Christmas was almost three months ago!).

Thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Thursday, February 28, 2008 8:17 PM PST

As you all know by now, no news is good news...Ivy's been in great form all week. We have LOVED not having to give her meds for several days, but today the next cycle started...so we are back to poisoning our daughter.

Despite two weeks off chemo, her ANC was only 924 today. Still very low, but above the 750 required for chemo. Platelets and hemoglobin are fine. I expressed my concern about our Disneyworld trip and the potential for Ivy being neutropenic at that time (only a month away!). Dr. F said that the docs would address that and we could alter her schedule a bit, maybe skip the 6-mp the next cycle.

We spent almost five hours at the hospital today, which is way too long. We stopped in to see our friend Josh, whose AML (leukemia) relapsed last week, but he was sleeping. Anyway, his family could use a lot of prayers and good thoughts right now. Josh is one terrific twelve-year-old boy.

(Tomorrow's the last day of February!!!)

love Allyson, Pete, Jasper and Ivy

Wednesday, February 20, 2008 2:58 PM PST

Whew. We are home. They sprung us even though Ivy's ANC is 273--well below the neutropenia threshold. We've never not been in the hospital with an ANC like that, so it's a little nerve-wracking. She will have to miss a birthday party this weekend, no grocery shopping, no playdates. They are holding all chemo and Bactrim (which can also lower counts) until next Thursday if it's confirmed that her ANC is back up (it had better be!).

And as for why her counts are so low, Dr. V insists it's a combo of chemo toxicity and a bad virus--he's still not worried.

I can't recall if I mentioned that Ivy had three negatives for c. diff, so they discontinued the yucky Flagyl yesterday. I hope it doesn't come back!

Ivy's mood is good and she's eating again: bacon, brownies and lemonade for breakfast!

Counting down...only nine days left in February.

love Allyson, Pete, Jasper and Ivy

Tuesday, February 19, 2008 3:31 PM PST

Just a quick update to say that Ivy ran a fever last night at bedtime, so we are in for another day--we'll go home tomorrow, Wednesday, at the earliest. Her hemoglobin and platelets have come up a bit, but her ANC dropped again, so she is officially neutropenic. The doc said, "Viruses can do a number on counts. I'm not worried in the least." He also said he was very worried about her when she first got here, but he is impressed by her recovery.

She's having a pretty good day: a short nap, a short visit with Emma and Beth, some painting, some Mr. Rogers on TV. Now she's commanded me to bring her a root beer, so that's how I am able to pop into the Resource Center for this update. What Ivy demands, Ivy gets! She's hardly eating at all, so some sugary liquid calories are better than nothing.

Thanks for checking in.

love Allyson, Pete, Jasper and Ivy

Monday, February 18, 2008 2:19 PM PST

We are still guests of CHO. Ivy's counts are surprisingly low and her pneumonia was surprisingly bad, so they are keeping her. Yesterday her ANC was this close to neutropenic, so they put her in an isolation room. Her xray from yesterday shows much improvement, so even though Dr. V thinks it is a viral pneumonia, he is keeping her on the two antibiotics--zithromax and ceftazadime--just in case. Ivy's c. diff started clearing right after starting the flagyl 10 days ago, but the onslaught of antibiotics has brought loose stools back. They are testing for the c. diff, to see if it's cleared. It requires three negative tests before they'll say it's gone.

All of Ivy's counts are low, but Dr. V says an infection can do that to you. They are continuing to hold her chemo. She also needs to be fever-free for 24 hours before she can go home, but unfortunately, she keeps getting a fever right at bedtime. Our fingers are crossed that tomorrow is the day!

Ivy is bored and cranky. It's hard not be, when you are cooped up in a room, taking a bunch of yucky meds and generally feeling lousy. Our room has a new flat-screen TV, but no DVD or VCR! No computer either, which is why these updates are far and few between. I am in the Family Resource Center right now, but you just never know when it will be open.

Thanks for checking in on Ivy. I hope this is the last update from inside the hospital!

love Allyson, Pete, Jasper and Ivy

Friday, February 15, 2008 8:17 PM PST

February remains a cursed month for us…Ivy is now in the hospital with pneumonia. In fact, not four hours after my last good news update about the c. diff, she ended up in the ER with a high fever. That was exactly one week ago. Since then she just hasn’t been herself. She developed a cold with a bad cough and she was not the energetic three-year-old we know. Then, last night, another fever, and vomiting all night long, at midnight, at 3, 4, 5, 6, and 7 am. The best part about that is that Jasper, who sleeps in the same room as Ivy, slept through all of it!

Pete spent the day with Ivy at the day hospital while they did cultures, labs, gave I.V. fluids and antibiotics and confirmed the pneumonia via xray. They found out her ANC, while not quite neutropenic, is still very low, so they are holding chemo until the pneumonia clears. The docs say she will be there a minimum of two nights. We hope that’s the maximum. It’s strange being there. It’s very familiar, but at the same time, we don’t know any of the patients there now. A lot of the nurses are happy to see Ivy and it’s great to see them too.

It’s a sad day in histio-land, as we learned that another little boy, three-year-old Joel, fighting both LCH and HLH, lost his incredibly courageous battle today. His journey was so traumatic that his parents were updating his webpage up to six times a day. So even with another hospitalization for Ivy we feel so very fortunate. Even our hardest days last year were easy compared to what Joel and his family have endured for months on end.

So happy #$%^* February—I can’t wait till it’s over!

Thanks to Kira for the ride to the hospital for Jasper and me, and thanks to Debbie and Beth for a yummy homemade dinner (and cookies!).

Good night.

Love Allyson, Pete, Jasper and Ivy

Thursday, February 7, 2008 4:16 PM PST

~~~~UPDATE, Friday, February 8, around 3 pm~~~~

Hallelujia!!!! (I don't know how to spell that word, because I've never had to before!) It's c. diff!!! It's a perverse world when the nurse and I are rejoicing on the phone that Ivy has a hard-to-treat bacterial infection. But rejoice we did. I am so relieved. Yay for c. diff!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

February has historically been a bad month for Ivy and therefore, us. February 8, 2005 was when she got the official diagnosis of Langerhans cell histiocytosis. February 14, 2007 was when she was admitted to the hospital for over 100 days with a terrible relapse. Now, February 2008, we are nervous once again. Ivy has had strange stools for at least six weeks. At first we attributed it to a virus, but this past week we confirmed that there is blood in it—not likely a virus. We left a stool sample at clinic today and we are fervently hoping it’s c. diff, like she had last summer. That’s that strange bacterial infection that people often get in the hospital, usually from antibiotics killing all the good guys in the gut. Ivy was on antibiotics at Christmastime. So anyway, even though it can be hard to treat, that’s what we’re hoping for.

Her labs were pretty normal, except for hemoglobin which was down a bit. Usually it’s 11-something, but this week it was 10.5. That’s reasonable, especially since she’s on daily chemo. The docs could not feel her spleen and Dr. F barely felt the tip of her liver, which is okay.

Ivy also has the start of a cold. For me, it was very mild; for Jasper, much worse, so we’ll see how it hits Ivy.

Finally we can see that spring is coming: the magnolia outside the kitchen window is blooming, and the gigantic old plum tree in the backyard has a few teeny tiny blossoms on it. We are counting the days until DisneyWorld—around 52, I think. Jasper lost another tooth this week, bringing his grand total to five!

So that’s our update…I’ll let you know the results of the stool tests.

Love Allyson, Pete, Jasper and Ivy

Friday, January 18, 2008 5:27 PM PST

Well, we are down six of 48 weeks of maintenance chemo. I can’t say that we have 42 weeks of chemo left, however, because history has shown us that when we think we are done, we are not!

Accessing Ivy’s port yesterday was fine, even though she was anxious about it. Her labs all look good—chemistries are completely normal, as are platelets and hemoglobin. The only things not in normal range are her overall white cell count (and the various types of white blood cells). This is to be expected with any kind of chemo. Her ANC is fine, though I can’t recall the exact number.

Ivy’s still fighting that virus of two weeks ago; her current symptoms include both the nasal variety as well as the intestinal variety. Loose stools always freak us out a little bit because of her initial LCH presentation, but both I and the docs are reasonably certain it’s a viral thing. Her lungs sound clear which is also a relief—could it be that she’s outgrowing her reactive airway disease?!

Chemo took a bit of a toll on her yesterday, more so than usual. She was extra tired and complained that her leg hurt, probably a side effect of the vinblastine. We are now enjoying (not!) the prednisone pulse too.

It’s amazing how, even though we’ve not spent time on 5 South since May, random people at the hospital still remember us. The cleaning guy, Mr. Brown, saw us in the cafeteria and gave us the friendly greeting he used to eight months ago. The “ambassador” (the guy who sits at the front desk and won’t let anyone in without a badge) still remembers Ivy’s name! CHO still feels like home away from home for us (though we always prefer to be at our real home!).

Only 73 days until Disney World (can you tell we are just a little bit excited?)!

Love Allyson, Pete, Jasper and Ivy

Tuesday, January 8, 2008 2:34PM PST

As always, no news is good news around here...we are all doing great, including Ivy, though she has a little cold.

Our most exciting news is that Make a Wish is granting Ivy's wish to go to Disneyworld!!! We will be there the first week in April and are SO excited! Ivy asks almost every hour, "When we going to Disneyworld?" which is funny because she really has no idea what's in store for her. I try to explain that it's like Fairyland but 1,000 times better and 10,000 times cleaner. She's excited because we are.

Jasper went back to school yesterday and it seemed to be a relatively painless re-entry. We had a fun New Year's Eve, attended two parties, and yes, stayed up until 12:30 am! Even Ivy and Jasper, those party animals.

We are being slammed with rainstorms, one after another. But I like it.

Believe it or not, donations for Hike for a Cure are still coming in. I don't know what our grand total is to date, but Pete and I are overwhelmed and humbled by everyone's generosity. A big fat thank you from the bottoms of our hearts is not enough!

I see the ticker is now up past 50,000 hits--that's a lot of visits to Caringbridge in just under three years. Thanks for checking in on Ivy!

love Allyson, Pete, Jasper and Ivy

Friday, December 28, 2007 4:38 PM PST

Yesterday at clinic Ivy and I let out whoops of joy when Dr. R said Ivy could stop taking that nasty antibiotic. I told him I thought it was a horrible medicine, which surprised him, because when he was a resident, they all taste-tested the various antibiotics and he said the worst were clindamycin and flagyl. Now, remember Ivy had flagyl when she had C. diff last summer and hardly complained! To each his own, I guess…

Ivy’s counts are great—yesterday was our first run with labs and chemo through the port on the same day. But labs came back in less than half an hour, which was a pleasant surprise. I don’t think it will always be so quick though. It’s still traumatic for Ivy to have the port accessed, but it seems to get better each time. I’m hoping we can go the entire three weeks between treatments without having to access it for anything.

For some reason lately I have been especially struck by how brave Ivy is—how much she really has to put up with, mostly without complaining. She’s only three years old and has had more medicine and surgeries than everyone else in our family combined. And yet she’s happy and smart and energetic almost all of the time. I know I’m her mom and I’m supposed to think she’s pretty special anyway, but she REALLY is!

Anyway, we had a wonderful Christmas—our first one in our new house!

We are hoping that 2008 is a HUGE improvement over 2007, which I have to say was the hardest year of our lives. So Happy New Year to all of you!

Love Allyson, Pete, Jasper and Ivy

Thursday, December 20, 2007 8:45 AM PST

~~~~~~UPDATE Friday~~~~~~
Yesterday Ivy had her second dose of the antibiotic that I can't spell. Dr. R didn't like the look of this thing she has her face so he put her on yet another antibiotic that I can't spell that is supposed to target skin infections. He noted that this antibiotic is one that is starting to be less effective against some bacteria, so I hope it actually works. Her weird skin thing looks like a very ugly, very large, very red pimple right below her eyebrow. So poor Ivy has to take a nasty-smelling med 3x/day for 10 days. Poor girl! She needs a break!

I'm hoping for no more updates for the next several days. Merry Christmas!

Check out the new photos--from the Cops Care Fantasy Flight party (the one where Santa arrived at NASA Ames Research Base in a helicopter!).

Ivy had to use her brand new port last night in the ER. She had a fever of 102 and even though the risk of a line infection with a port is significantly lower than with a Broviac, it still means a trip to the ER for line cultures and antibiotics.

Pete took her in (we take turns) so I didn't have to witness the blood-curdling screams as they removed the dressing and accessed the port for the first time. Her surgical site is still painful. I have to bring her in to clinic today for the second dose of ceftraxedone (another one I can't spell), so that will be another traumatic event for Ivy. I'm sure she's wishing she still had her trusty old Broviac, but hopefully in the near the future she will see the benefit of the port.

Today Ivy's a little droopy and cranky. Hoping it will pass!

We are in the mad scramble leading up to Christmas (and darn it, I was looking forward to having this whole day free!) and like many of you, are wondering how we will get it all done. But we will...somehow. We will have a Christmas weekend with Nana, Gramma, and Aunt Jaan, then spend Christmas Eve and Day with Pete's family.

Now I need to go plan a menu...

love Allyson, Pete, Jasper, and Ivy

Monday, December 10, 2007 5:32 PM PST

~~~~~UPDATE MONDAY AFTERNOON~~~~~

Bye-bye, Broviac! Surgery went well. Ivy is home and doing well, the proud new owner of a port-a-cath.

~~~~~UPDATE THURSDAY AM~~~~~

Well, so much for a medical-free week. Ivy is scheduled to have her Broviac removed and a port placed on Monday morning. So they want us to do labs today and then tomorrow go in for a quick physical to make sure she's up for surgery. This is very exciting, but I'm also a little anxious. This seems like an elective surgery which I feel bad about putting her through, but we are hopeful that her and our quality of life will be much improved. Eek!

The holiday party at CHO was a lot of fun. This is the third year we've attended and each year we know more people. This year we saw friends from 5 South, from clinic and from Camp Okizu. It's always a nice little reunion.

What an extraordinary week this is! The only reason we have to go to CHO is for the holiday party tomorrow night! I can’t remember the last time we have had a week without some kind of medical appointment for Ivy. We don’t even have to do labs this week.

Ivy is doing great. So is Jasper. In fact, the only sickies in our house right now are the grown-ups—luckily minor viruses only. We are slowly getting used to Ivy’s extremely complicated medicine schedule. Every day she takes some kind of med, but some days it’s only one a day, sometimes two, sometimes three, and sometimes four. She, at not quite three-and-a-half, is now swallowing pills. They are teeny-tiny, pale yellow methotrexate pills, but she’s got to take four at one time. And she did it! We are so proud (and yes, relieved—mtx does not come in a liquid form!).

Besides the normal Christmas and Hanukkah parties this time of year, we, because of Ivy’s illness, also fill our calendar with other fun events especially for pediatric oncology patients. The holiday party at CHO is one (with a gift from Santa!); on Saturday is the Cops Care Fantasy Flight, which we attended last year. It’s quite a party, lasting all day long, with food, jumpy houses, face-painting and yes, another gift from Santa. But at this party they ask the parents what the kids would like (siblings included) and they will spend up to $100 per child. It’s truly amazing how generous people can be, especially when it comes to kids with cancer (and histiocytosis, etc.).

Another VERY exciting event this week will be a visit from two wish-grantors from the Make a Wish Foundation! Some people blanch when I tell them this, thinking MAW is for kids with terminal illnesses only, but MAW grants wishes to any child with a life-threatening disease, which LCH certainly is. So they will interview Ivy, which should be interesting to say the least: 1) she’s three years old; 2) she’s shy with strangers; 3) she can be hard to understand; and 4) she doesn’t really get the concept of making a wish. So we’ll see how the wish grantors interpret her wish. I’m sure no matter what it is, it will be fabulous.

So right now, this week, this month, life is good to us. But two children whom I’ve been following on Caringbridge have died recently, another LCH child is fighting sepsis, and my good friend and colleague Bill passed away very unexpectedly last week. I won’t bore you with platitudes about how you can’t take anything for granted, make sure you hug and kiss your kids, etc., but really, it is shocking how quickly things can change. Bill, though he had no children of his own, was always very concerned about Ivy and came to visit us in the hospital last spring. I am not the only one mourning for the loss of an extremely kind and thoughtful man.

Love Allyson, Pete, Jasper and Ivy

Monday, December 3, 2007 10:49 PM PST

Today Jasper is six! Almost every day I marvel at how grown up he is—in 2007 he’s had two major spurts of maturity: last spring when Ivy was in the hospital and then again this fall when he started kindergarten. He’s a wonderful boy and Pete and I are so proud of him.

Ivy is doing well also. Her ultrasound went fine (she got to watch Nemo the entire time). On Friday Dr. T and I reviewed the radiologist’s report—the entire three sentences of it. Unfortunately, the ultrasound shows splenomegaly (enlarged spleen). Also, unfortunately, the report did not have specific measurements (and Dr. T went into a long discussion of the literature about ultrasounds and spleens, most of which I don’t recall, except that I think spleens are hard to measure and can be inconsistent between individuals and even inconsistent in the same individual. Or something). But what we now have is a baseline, so in three months Ivy will have another ultrasound and we will hope to see that the spleen has shrunk or at the very least, has not grown any. Dr. T did say that ultrasound is very good at looking at irregularities in the spleen and that Ivy’s looks great. No infarcs or anything like that (she had infarcs, aka, “dead spots” on her spleen at the time of her relapse).

The other things they looked at—liver, kidneys, gall bladder—are totally fine and normal.

Dr. T also said that kids sometimes will have slightly large spleens and it means nothing. He palpated her and said he could feel the tip of it when she inhaled (or maybe when she exhaled?). I suspect that Ivy still has lingering histio, but I suppose the hope is that the next year of chemo will keep it in check and then it will burn itself out. Oh, how we hope so!

Ivy will start the next phase of chemo on Thursday. I am a little sad that she will taking some kind of medicine EVERY SINGLE DAY for the next 48 weeks, but happy that we won’t be in clinic every week. But I am not comfortable skipping it for three weeks either, so we’ve worked out a complicated schedule where Ivy will be seen every 10 days or so, at least in the beginning. We will do labs every week for awhile also.

Pete and I are in agreement that we’d like to swap out Ivy’s Broviac for a port, so Dr. T will email the surgeon to see if that’s a viable option for Ivy, considering she’s already had a Broviac on each side of her chest. I hate to put her through another surgery but it will mean she can swim and bathe without worry of infection and Pete and I won’t have to deal with dressing changes. Blood draws will be trickier because I won’t be able to do them at my leisure at home, but that is relatively minor, I think.

Onward…

Love Allyson, Pete, Jasper and Ivy

Wednesday, November 28, 2007 5:30 PM PST

Ivy and I spent a few hours in the ER last night. She had a fever of 102.3, so as soon as Pete got home from work, Ivy and I dashed off to CHO (hoping that if we got in early in the evening we’d get home before midnight—and REALLY hoping they wouldn’t want to admit her). By the time we got to the hospital her fever was over 103.

But her chest x-ray came out clear, blood cultures are so far negative, and the flu test was negative also. So they gave her a hefty dose of Ceftaz (still haven’t learned to spell that one) and we were home before 11 pm. Grammie took her in to clinic this afternoon for the second dose of antibiotic.

Ivy will have her ultrasound tomorrow morning, but unfortunately she has to be NPO (in other words, STARVING!). Then we meet with Dr. T on Friday.

We’ve gotten good news about a few of our pals from 5 South that we are very happy to hear! Hoping the trend continues for every child who passes through that ward.

I'll try to update soon after we meet with Dr. T on Friday afternoon.

Love Allyson, Pete, Jasper and Ivy

Monday, November 26, 2007 5:26 PM PST

I really should update much sooner after Ivy’s appointments, because five days later, much of the information in my brain from Wednesday has dissipated…

We saw Dr. T, which is always a good thing (but getting rarer and rarer, now that he’s the big shot chief of neuro-oncology). He is a font of knowledge and I always enjoy our discussions. Anyway, we have Ivy’s maintenance plan and I am disappointed that it includes prednisone. Essentially, we have spent the last nine months traveling this LCH road without a map—Ivy is probably the only child on earth who has received that particular combination of trial therapy (cyclosporine, which didn’t help), three cycles of Ara-C/2-CDA (which did help, thank goodness), then this unusual “continuation” therapy consisting of Ara-C, vincristine and prednisone (seems to be working).

But now Dr. T has decided to follow a road map, so to speak, and is putting Ivy on the high-risk arm of the LCH III maintenance protocol. It’s tried and true, so why not? It is complicated, but basically involves vinblastine, methotrexate, 6-mp, and prednisone. The vinblastine will be the only I.V. drug, once every three weeks. So this led us to discussing whether or not Ivy’s Broviac should be replaced with a port under her skin. There are pros and cons to each, but the surgeon at CHO who has a special talent for swapping one for the other using a wire (?) is leaving in 40 days, so we have to decide rather quickly.

Interestingly, Ivy is now self-conscious of her Broviac, realizing that she’s the only one outside of CHO who’s got one (in her world, anyway). This makes us appreciate the fact that for most of her medical stuff she’s been young enough to not worry about losing her hair, or having a Broviac, or being scared that she’d die. I can’t imagine going through this with an eight-year-old, for example. Ivy is also getting interested in having long hair. She certainly didn’t mind when it all fell out, but suddenly she’s talking about wanting it down to her shoulders and being able to tuck it behind her ears. She’s such a funny girl.

Her abdominal ultrasound is scheduled for Thursday at 9:30. Then we meet with Dr. T on Friday afternoon to discuss results and to decide precisely when maintenance will begin. We are not expecting any unusual results though—the ultrasound is to be used as a baseline to avoid further radiation exposure from CT scans.

We had wonderful Thanksgivings (yes, there were multiple, one in Lodi and one in Oakland two days later—I am turkeyed out!). Now we look forward to Jasper’s sixth birthday next Monday.

Thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Friday, November 16, 2007 4:51 PM PST

Time for a quick update—Ivy is doing well, overall. Her spleen is back to normal size (yay!!!), liver a bit enlarged, but Dr. F (last week) said he was not the least bit concerned. Blood counts are great. Energy is good. Weight is up a teeny bit. Hair is coming back in curly (!), just like her brother, lucky thing.

Ivy had a slight fever a couple days ago, just barely over 99 degrees. It went away before bedtime. She also had an earache the evening before that—she woke up crying several times that night. Then, yesterday while she was being examined by Dr. G, I noticed a tremendous amount of gooey earwax coming out of the ear that had been hurting her (sorry, I know that’s so gross). I had never seen anything like it, but Dr. G said they see it all the time now that parents (smartly) don’t use q-tips anymore.

Being a histio mom, I, of course, worry about fever. And I worry about ear issues, because LCH manifests in the ear so frequently (in Ivy too, we are pretty sure). So let’s just hope those two things don’t make a reappearance…

Yesterday was our last visit to the Day Hospital!!! I brought coffee cake and muffins from our favorite bakery…still feeling a little guilty that we didn’t do something like that for the excellent nurses and others on 5 South (but in our defense, when we left, we didn’t know we weren’t coming back!). So now we have one more I.V. chemo next Wednesday, then move on to oral chemo. Only eleven more prednisone doses to go!

Ivy’s abdominal ultrasound has been scheduled. And rescheduled. And rescheduled. And rescheduled again. I kid you not. Currently I am awaiting a call from CHO radiology to find a date that works for all of us. But we are looking at the week of November 26-30.

Since I may not update before Thanksgiving, I will wish you all a happy one now: Happy Thanksgiving! We have a lot to be thankful for this year. The list is long, but number one is that Ivy is still with us, doing just fine. Every day we are grateful for that.

Love Allyson, Pete, Jasper and Ivy

Friday, November 2, 2007 6:35 PM CDT

No updates in awhile and that’s a good thing! Ivy’s spleen continues to shrink, to the point that yesterday Dr. G said he could barely feel it and he was pressing HARD! So we don’t know why it got big and we probably never will. Hoping we never have to try to find out!

We are to the point that I am counting down the prednisone doses left for Miss Ivy—as of this writing she has 25 more to go. Her last dose will be the day after Thanksgiving. We are down to only three more weeks of I.V. chemo, but we are still waiting to find out what maintenance will consist of and how long it will last. Also no word on when Ivy will have the ultrasound of her belly (to be used as a baseline).

Our Halloween was fun. My kids, bless their little hearts, are so accommodating and wanted to wear last year’s costumes. Well, by all means! So Jasper was a lion (the 4th year in a row he’s worn that costume—it’s two pieces, so very flexible in terms of size) and Ivy was a puppy. There is a lot of candy in our house.

I know people are reading this, but please, sign the guestbook every once in awhile, so we know who you are!

Love Allyson, Pete, Jasper and Ivy

Friday, October 19, 2007 5:33 PM PDT

I guess I haven’t updated all that recently…mostly because things are pretty stable. Ivy finished her course of antibiotics and her pneumonia, if it was indeed that, improved a bit. It was probably viral. She’s still coughing but the cough has evolved from a tight, unproductive cough, to a looser, wetter one (a pretty natural course for a virus is what I believe one of the docs said). She was a bit “crackly” yesterday at the Day Hospital, but an albuterol treatment helped. Pete actually took Ivy to her appointment yesterday—it was his very first time seeing the Day Hospital. I was grateful to not have to go—those days are long! Ivy is starting the last cycle of this phase of treatment. That means only two more Day Hospital days and three more I.V. chemo days in clinic (got it? That puts us at five more weeks of I.V. chemo).

Then the next phase (maintenance) will consist of oral 6-mp and methotrexate for either six months or two years. I was under the impression we were looking at two more years, but the last time I spoke to Dr. T (two weeks ago) he was recalling only six months. So he said he’d check his notes, but we have not heard back yet. This next maintenance phase will NOT include steroids and that is GREAT!

Ivy’s spleen is still palpable and nobody has a clue why that is. It’s not huge by any means, but there it is hanging down below her ribcage, which it should not be doing. But she’s not acting sick…and she’s not in pain. So we just watch and wait (oh, how sick I am of that!). They are scheduling an ultrasound of her belly sometime next month. Normally I think they’d do a CT, but we are concerned about the extreme radiation exposure. I have heard that a CT is equivalent to about 1000 x-rays. Yikes. Ivy’s had at least six CTs in her short life.

Last weekend we participated in Light the Night to benefit the Leukemia and Lymphoma Society with our friend Lauren from CHO. Lauren, who is seven, got up on stage in front of hundreds of people and belted out “I Will Survive,” ALL BY HERSELF!!! What a remarkable little girl she is. And I have to say if it weren’t for evil LCH, we would not have met her nor her wonderful family. There are little blessings everywhere.

That’s all the news from Oakland…fall is most definitely upon us and Jasper is SO excited about Halloween! It’s very sweet to see. It’s not that he’s looking forward to the gobs of candy he’ll get, he’s just enthralled with anything Halloween-y. He likes to draw Halloween things and play with his Halloween flashlight every night before bed. Five-almost-six is a delightful age, for sure. Plus, he’s learning to read. Very cool!

Ivy is also inspired by Jasper’s kindergarten experience and has learned to write her name (she’s been able to spell it aloud for ages now). She also likes to do her “homework” while Jasper does his.

Our neighbors and home co-owners Debbie and Eric (they live in the front, we in the back) have welcomed a new daughter very early on the 18th. Still no news on the name though!

Thanks for reading…
Love Allyson, Pete, Jasper and Ivy

Thursday, October 11, 2007 6:15 PM PDT

Many ups and downs since the last update a week and a half ago…

I’ll start with the ups…Donations for Hike for a Cure have continued to roll in, but today’s mail took us well beyond our goal of $10,000. My cousin Autumn went into a fundraising frenzy herself, spurred on by her two children Tynnan, age 10, and Asa, 6. Tynnan made bookmarks to sell in honor of Ivy and Asa held a name-writing-a-thon, where people paid him to write his name over and over again (good thing it’s only three letters long!). Autumn’s husband Ryan’s guitar students had a mini-concert at a street fair and a bunch more donations rolled in. All told, there is more than $1600 here!!! Wow, guys, we are moved to tears—we are so grateful for your generosity and devotion to Ivy!

Now for the downs…which haven’t been dreadful, thankfully, but concerning anyway. Last Wednesday Ivy had a fever; luckily it was during the day so she was seen at clinic rather than having to wait for hours and hours in the ER. Because her fever wasn’t too high, and her ANC (ability to fight infection) wasn’t too low, they held off on antibiotics. That was a first! The blood cultures turned up nothing, as usual. Ivy was a bit droopy for a few days and it was impossible to know whether she was fighting a virus, being beaten down by the cumulative effects of chemo, or ???

Then, Tuesday night, another fever. Pete and I “broke the rules” by not calling in, but we carefully weighed the decision and decided that since Ivy was still eating and playing, we would just monitor her very carefully through the night. By 3 am the fever was gone. But of course, it reappeared yesterday around 5 pm. Again, Ivy was eating and playing, but this time we called in, knowing it meant a long spell in the ER.

Anyway, to make a long story a bit shorter, Ivy probably has pneumonia and has been started on Zithromax. Already she seems better. They held off on her methotrexate and told me to delay the prednisone also, just to make sure she gets a handle on fighting this thing. If no fever today, then she’ll get both tomorrow.

The docs (at least four of them!) are still feeling the very tip of Ivy’s spleen. Don’t know what that’s about, but Dr. T, as usual, is very, very reassuring. He really wins the prize in the calming-down-anxious-parents department. He says Ivy looks better than she ever has and he’s not worried in the least.

That’s all for now…thanks for checking in and many, many thanks for the donations still coming our way.

Love Allyson, Pete, Jasper and Ivy

PS: Enjoy the photos of the Hike!

Monday, October 1, 2007 11:04 PM PDT

I wanted to give all our supporters a quick update on Hike for a Cure, which was not only tremendously successful as a fundraiser, but also a whole lotta fun! We made our silly little goal of making the top 5 on the Hike webpage (and are now at #4 thanks to some very generous donations that came in while we were at Yosemite—thank you!!!).

We met old histio friends from past events and met new ones. There was a group of five or so little girls, all histio warriors, ages three and four—I wish we had gotten a photo of them all together. We met Bethany, who is the reason the HAA exists; her parents founded it when she was diagnosed as an infant in 1982. Coincidentally, she has the same birthday (June 15) as Ivy. Hikers came from many U.S. states and Canada, and the best part is that we all raised over $200,000!!! That’s a lot of research grants that can funded this year!

Our friends Becky and Kate joined us this year in the hike; they have raised almost $1500! We are thrilled that they were able to do it this year and are now putting out the word to the rest of you: if you want to hike and raise money next year, it’s not too early to start planning. We’d love to have you join us.

Pete, once again, scaled Half Dome. He left camp at 5:15 (yes, that’s a.m., when it’s still dark out) and returned around 6 p.m., tired but happy. The kids and I did the “moms’ hike,” meaning we left camp after a leisurely breakfast and hiked up to the bridge below Vernal Falls for the famous bridge picture that is taken every year. I was asked to be “the caboose” for this group—basically, take up the rear and get the group of 30 or so up to the bridge by 11 am. It was a good role for me, an excuse to be the slowest! I carried Ivy on my back, just like last year, but she’s a bit heavier now and I’m in worse shape than last year. My quads are paying for it today! I’m not sure what possessed me, but after the bridge photo I asked Ivy and Jasper if they wanted to climb a little higher and lo and behold, they did! So we contined on up the mountain, with Ivy walking this time. I am so proud of my rascals—they made it almost to the top of Vernal Falls. In fact, they wanted to continue on, but I was getting worried about getting all three of us down the mountain in one piece.

At our resting place just below the falls, a man asked about our Hike for a Cure t-shirts (he asked, “Are a whole bunch of you wearing those shirts today, or am I just seeing the three of you over and over again?”). I told him the story, introduced him to Ivy, and he whipped out his checkbook (what, you don’t carry your checkbook when hiking Yosemite?) and wrote a check to the cause. This is not the first time that’s happened, evidently.

So, yes, it was a wonderful weekend! No bear sightings this year, but we did see a coyote trotting down the road, completely unperturbed by the hordes of tourists. Excellent weather, good friends and a worthy cause. What more could we ask for? We are so grateful to the McPeek-Bechtolds for organizing the hike and giving us the opportunity to raise funds in a much bigger way than if we were to do it ourselves. And of course, we are grateful for every last donation that has poured in, in honor of Ivy. She doesn’t know this is all about her, but she loves it nonetheless!

Thank you, everyone!

Love Allyson, Pete, Jasper and Ivy

Thursday, September 27, 2007 12:22 PM PDT

Argh. Just when you think you can start to exhale, the doctor says, “Hmm, I feel the tips of her liver and spleen.” The liver, well, okay. In kids Ivy’s age it’s okay to feel about 1 cm and they are feeling even less than that. Plus, the prednisone could cause the liver to swell slightly. But the spleen…The Fellow initially did not feel it, but Dr. F did. But he said he remembered noting that before and sure enough, after flipping through Ivy’s chart he said he had felt her spleen in June. So that means what? I don’t exactly know. That this is not necessarily a new thing? And that’s good, I guess? Both doctors said not to worry multiple times and that we’ll just watch. Easy for them to say.

So we will be heading off to Yosemite tomorrow with a little bit of anxiety. It’s very reassuring to know that Dr. McClain will be there, should something happen with Ivy, or even if we just want an opinion of what’s going on. Today the Fellow was raving about Dr. McClain—how kind he is, and how knowledgeable. It is certainly true.

Other than a chronic cough, a runny nose, and a bit of steroid rage this morning at clinic, Ivy is doing fine. Right now she’s sitting in the sun playing with her kitty, Jack.

Jasper has lost his other front tooth and looks very, very cute. I took a couple of pictures, but had to use a disposable, FILM (gasp!) camera, so I won’t be posting the pics any time soon.

The donations for Hike for a Cure are continuing to flow in. On the main webpage they post the top five fundraisers and this morning we were only $7 below #5! We are desperately trying to make that list, even if it’s for only 10 minutes. Help us out! We are more than halfway to our goal of $10,000, but still need some help getting there. Remember, EVERY LITTLE BIT counts!

I am including a post from our histio website to let you all know how your donations get spent (not specifically, but generally).

"Hello friends:

I am currently at the Histiocyte Society meeting in Cambridge, England, day #2. This has been a very exciting meeting with a large number of research physicians attending from all over the world. The abstracts presented are quite impressive and very scientifically sophisticated. It's quite wonderful to witness the enthusiasm and dedication these physicians have for finding a cure! MUCH OF THIS RESEARCH WOULD NOT BE POSSIBLE IF IT WEREN’T FOR ALL YOUR FUNDRAISING EFFORTS. Keep up the good work!

I will have more information later.

Best,
Sandra

Sandra Conway Warren
Lounge Host/Patient Advocate"

Our heartfelt gratitude goes out to everyone who has already donated. Thank you!

Love Allyson, Pete, Jasper and Ivy

Thursday, September 20, 2007 10:18 PM PDT

We have often been the recipients of the generosity of strangers, and it has happened once again. This most recent incident was at the Farmers’ Market on Sunday (see, that’s why Ivy KNOWS the Farmers’ Market—we spend a lot of time there!). The kids and I were sitting on a curb having a snack when a woman approached us, asking, “Are you Ivy?” Ivy, of course, said nothing, but I confirmed her identity. The woman then said, “This is for your daddy’s hike,” while pulling $40 in cash out of her pocket. She said she follows Ivy’s website and recognized her sitting there on the curb. I was almost speechless, but did gather my thoughts enough to ask for her name. After she walked away, I kept saying, “Oh my gosh. Oh my gosh. Oh my gosh.” Ivy and Jasper wanted to know what happened but I couldn’t tell the story without choking up. It’s so heartening to know how good people can be.

Ivy is doing fine. She got her Ara-C and vincristine today and is now napping in the car (I am also in the car, typing this up on the laptop). In a few minutes we will walk over to get Jasper and his friend Liam from school. Pete is spending his day under the house, installing a heating system (none too soon—the weather has turned!).

We are thrilled with the Hike for a Cure donations pouring in. We have not met our goal of $10,000 yet, but overall the Hike has already raised $100,000 this year. We are amazed by and grateful for the generosity of all those helping us find a cure for histiocytosis. Instead of funding two studies with this money, we may have enough to fund three! That would bring us that much closer to a cure for Ivy and her fellow histiocytosis warriors. Imagine what that would be like…

Love Allyson, Pete, Jasper and Ivy

Saturday, September 15, 2007 11:17 AM PDT

I haven’t updated in awhile, because (thankfully) there is not much going on medically for Ivy. She gets her weekly chemo, we do labs, she happily takes her prednisone and bactrim, she has her periodic steroid-induced rages, and we carry on.

Our day-to-day lives are hectic, especially when you throw the medical stuff into the mix. We are two working parents (I work 24 hours a week), who are adjusting to public school, trying to be very involved in said school, keeping up with birthday parties, playdates, grocery-shopping, house-cleaning, house-unpacking and organizing (still!), Hike for a Cure fundraising AND training (for Pete). I guess this is normal life!

We had another fun camping trip last weekend, at Calaveras Big Trees State Park. We had camped there last when Jasper was a wee 20 months old. This time, we did it right, going with two other families—having six parents on hand makes everything easier!

I can’t remember if I mentioned that Jasper is in a K/1 class, actually one of only six kindergarteners in the class. Essentially he is doing 1st grade work, and doing pretty well with it. So far, he’s liking school. He lost a top tooth yesterday, so now he looks the part of a 1st grader as well.

Ivy makes us laugh with her three-year-old “Ivy-isms.” A couple nights ago she said, “Remember when we saw the movie at the movie station?” Of course, she meant movie theatre, but that word hasn’t quite made it into her vocabulary. Then we had this little exchange at the hospital on Thursday:

[We had stopped at the pharmacy to pick up Ivy’s meds, but they weren’t ready yet, so we sojourned to the cafeteria for lunch. We were on our way out of the cafeteria.]

Ivy: We going to the Farmers’ Market?

Me: No, not today.

Ivy: To get my medicine?

Me: To get your medicine? OHHHH. The PHARMACY, not the FARMERS’ MARKET!!!

The other passenger in the elevator had a good laugh. And how nice that “farmers’ market” is in Ivy’s vocabulary, but not “pharmacy.” Though how it could not be, I can’t fathom. We’ve been there scores of times it seems.

So that’s our exciting update! Pete is off on a training hike today, the kids are at Emma’s soccer game, and lucky me, I get a few hours of solitude. (And being a mom, I am spending it cleaning! And writing this update, of course.)

The new photos are from Jasper and Ivy’s first and probably last modeling gig. They did a photo shoot for Aunt Jaan’s company. The photos may not make it into the company catalog, but we got some nice photos out of the deal! (Note that I did not know they would take pictures of me that day, hence the no-makeup, dirty-hair, less-than-stylish look for me).

We’ve had a bunch more money roll in for Hike for a Cure—THANK YOU! Remember, histiocytosis is an orphan disease; it gets NO federal funding for research. If we want a cure (and we most certainly do!), it’s up to grassroots efforts like H4AC to raise funds for research. 100f money raised will be used for research! Thirty years ago, Ivy would have died from her disease. Because of research funded by other families and friends we may have saved her life. Please donate if you can! You can use the link below or email me if you’d like to send a check. It means the world to us.

Love Allyson, Pete, Jasper and Ivy

Tuesday, September 4, 2007 11:11 AM PDT

~~~~~UPDATE Wednesday 1pm~~~~~
We are outta here! No more fevers, nothing growing from the cultures, blood counts all good. Ivy's asthma is a little bit worse, but there's something in the hospital causing that. Yippee!

It’s hard to believe that we could be sleeping outside under the stars one night and the very next night be sleeping at CHO. But that’s exactly what happened. We got home from Camp Okizu around 4 yesterday and by 9 or so, Ivy and I were in the ED. Ivy had a sudden fever which got as high as 104 last night. Of course, they took blood cultures and nothing has grown yet, so we have no idea what’s going on. She’s on fortaz (antibiotic) and her fever has stayed away since she started it, but regardless, we will be here for at least two nights.

They won’t let us on 5 South because Ivy has a cough (probably an asthma-type thing—she’s had it for weeks; x-ray came back clear). So we are on 5 East, but luckily do not have a roommate—the ward is fairly empty. One of our favorite nurses is here.

And despite this little setback we still feel very fortunate, after hearing many heart-wrenching stories at camp. On Saturday and Sunday mornings they have parent support groups while all the kids go off for adventures with the counselors. In our group of 12 or so families, three had been told their child has no more treatment options. One boy had lost both eyes to retinoblastoma; another girl had lost an arm to osteosarcoma. How can we not feel so incredibly lucky?!

Like last year, camp was great. Really, really great. We ended up in a cabin after all, which was nice. Our favorite activity this year was canoeing. Pete and I rowed, while Ivy and Jasper rode in the middle. There is a fountain in the middle of the lake and we paddled through it many times, shrieking each time. It was joy seeing all the kids with Broviacs swimming in the lake (the oncology Fellow I spoke to last night was shocked that they allow this!). All four of us did the Zip line, flying through the air over a canyon. We did the ropes course, tried to catch a fish (no luck), had a dance party, a campfire with s’mores and once again, can’t wait to go back. I strongly encourage our Northern California oncology families to attend!

Ivy’s demanding computer time, so I must sign off. Thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Friday, August 31, 2007

Just the quickest of updates to say that all is well with Ivy—two-hour wait to see the doc in clinic yesterday, just to tell him she is fine. So he said we don’t have to see the doc on clinic days anymore. We will see one every other week in the Day Hospital. Yay!

We also had a brief encounter with Dr. T in the cafeteria. I wish we could see him more often, but he says he “keeps his ear to the ground,” meaning, I suppose, that he knows what’s going on with Ivy, even though he doesn’t see her too often. Luckily, very little is going on with Ivy!

We now have a kindergartener in our household. It’s a period of adjustment for sure, but more for me than for Jasper. He seems to really enjoy it, skips to school in the morning, is in a great mood when I pick him up. But Oakland public school (no matter how small, how highly regarded) is NOT the cozy little Montessori preschool we came from. We will get used to it, I’m sure.

We are leaving for Camp Okizu this afternoon—very excited, but very disorganized! I will be glad when September is over, because we have TOO MUCH going on (even though it’s mostly good stuff, like starting kindy, Camp Okizu, and Hike for a Cure).

Thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Friday, August 24, 2007 8:01 PM PDT

Another uneventful week, from a medical standpoint…from a criminal standpoint, not so much. We realized last night that someone had come in to our house and taken our DVD player and digital camera. I won’t go so far as to say it was our fault, but we should have learned our lesson when this happened to us before: lock the windows! Anyway, it’s upsetting and unsettling. What a fine welcome to Oakland, eh?

I took both kids to the Day Hospital yesterday, expecting a trying morning, but both of my children were so well-behaved I was in shock. Don’t get me wrong—they are great kids, but they are definitely high energy (they SOOO didn’t get this from me!). Anyway, I didn’t even have to take the laptop out of the bag for some Internet entertainment (for them). We just had a nice time sharing the hospital lunch, doing puzzles and making art.

We found out that there is room for us at Camp Okizu for Labor Day weekend if we bring a tent, so we are very excited about that! Okizu, here we come!

We have a prototype of our Hike for a Cure brochure, but need to somehow find the time to print, fold, stamp and mail. Many thanks to those who have already donated, either online or via good old-fashioned check! 1) We will (help to) raise $100,000, 2) Pete will climb that rock, and 3) one day soon, Ivy will be cured! This last is our greatest hope and by achieving number one, we can make it happen.

Thank you for checking in. I’m so happy it’s just another boring update!

Love Allyson, Pete, Jasper and Ivy

Friday, August 17, 2007 9:46 AM PDT

Medically speaking, it’s been an uneventful week…just how we like it, of course. We had the shortest clinic appointment ever yesterday, despite us arriving 15 minutes late. It’s been a tradition to head across the street to the hospital cafeteria for the world’s best grilled cheese sandwiches, but it was still so early the grill wasn’t even open yet! So we decided to head up to 5 South to visit with some of the nurses.

It was strange. There were some nurses we had never seen before and of the 12 rooms, 10 were filled with kids we had never seen. It’s been almost three months since we were inpatient and there has been a lot of patient turnover. Which, of course is good, but also a bit disconcerting. We always picture 5 South exactly as we left it. We had a visit with little Ethan and his mom and they invited us back today so Jasper could play with Ethan’s big brother, Shane, also five, also starting kindergarten. Jasper and Shane hit it off when they first met back in March.

Today is Jasper’s last day of preschool, so we will be attending the graduation party this afternoon. The school has been a wonderful source of support for us and we are very sad to be leaving! Then Jasper will have a week off before starting kindergarten on the 27th.

We are enjoying living in our new house and getting little things done, bit by bit. We finally selected and put on the knobs for our kitchen cabinets, for example. We bought our towel racks for the upstairs bathroom and hope to install them this weekend. We have a ways to go on these odds and ends, but we love our house!

We are very grateful to those of you who have already donated to Hike for a Cure. It’s very, very easy to do by clinking on the link below. We are almost finished with the brochure, so you can wait for that to come to you in the mail also. Anyway, however you do it, we appreciate it! We believe there can be a cure for histiocytosis in Ivy’s lifetime! Almost 100% of Hike for a Cure money goes directly to research.

Have a wonderful weekend and thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Thursday, August 9, 2007 12:58 PM PDT

I finally got smart this week and thought to bring the laptop to the Day Hospital—the entire hospital has free wireless, so why did it take me so long? It helps Ivy pass the time too, playing her Elmo games on PBSkids. And I get to update the website!

Ivy is great. Her counts are good and we have no weird issues this week. Her stool samples came back negative for everything and now of course, her stools are totally normal. That’s a relief. She’s fighting a lingering cold, which has circulated through all four of us.

We are having a nicer than average time in the Day Hospital, because we are having a 5 South reunion! We’ve seen little Ethan, Riktor and Justine. We are happy to find out they are all doing well.

Ivy and Jasper each have a major milestone this week: Jasper has mastered riding his two-wheeler (two-wheelder he calls it—or maybe two-wielder?) and Ivy is FINALLY tall enough to ride the rides at the zoo! This has been disappointing for so long, hearing them tell her, “Sorry, you’re too short.” The look of sheer delight on her face as she rode the airplane ride and the car ride was priceless. I’m so happy for Ivy and so proud of Jasper.

I guess that’s all the news from Oakland this week…we are second on the waiting list for Camp Okizu for Labor Day weekend. We hope we get to go, but I hate not being able to plan!

Don’t forget, we are raising money for Hike for a Cure! Click below to sponsor Peter Schoenberger! Thanks for reading.

Love Allyson, Pete, Jasper and Ivy

Friday, August 3, 2007 10:32 PM PDT

Pete said it was time we removed his ugly mug from the website, so you all benefit by getting to see new photos of Ivy and Jasper.

Blue Shield sent us a nice little note to say that they are processing our claim for the month of May for $205,000 (!!!!!!!!!). Holy cow. We don’t actually submit claims, so for the most part we are blissfully unaware of how much Ivy’s care costs. At this rate we will be approaching one million dollars for 2007. All I can say (besides holy cow) is thank goodness we have medical coverage, because where would we be without it? (Actually, CHO treats every child regardless of ability to pay, so I think we’d be getting the same top-notch care—at least I hope so.)

Of course, what really matters is Ivy, and Ivy is…GREAT! There was a bit of a scare at clinic yesterday when Dr. K said her CRP (a non-specific measure of inflammation) was 40 (normal is 0-0.9). They haven’t been tracking this, except for very sporadically over the past 2 ½ years. It was at its very highest (besides this week) on Christmas Eve 2005. This is when we spent eight hours in the ER when Ivy had what turned out to be rotavirus and pneumonia. In February, at the beginning of her relapse it was elevated, but not nearly as high as that Christmas Eve. So yes, elevated CRP corresponds to sickness, but not necessarily to raging LCH (for Ivy, anyway). But for some reason, they’ve now decided they want to use it as a baseline for Ivy (I suspect this is the Fellow’s idea, not so much Dr. T’s).

Anyway, if you’ve followed along this far, they retested Ivy’s CRP yesterday and it was a benign 1.7 (probably slightly high from her little cold that she caught from Jasper). Lab error. Whew.

Her stools are getting interesting again, so they are testing for C. diff, rotavirus, and red and white blood cells. There’s some mucus involved, which could be from her excessively runny nose, or from some kind of infection. We think it’s unlikely to be LCH. They also say it’s unlikely to be caused by the chemo—her doses are too low. Ivy likes to keep us on our toes…

We are one third of the way through this part of treatment…16 more weeks to go and then we can banish prednisone from our house!

We are cramming summer fun into our last weeks of summer: Fairyland (three times!), hours and hours at the park, walks to get ice cream after dinner, and bike riding until dark. I don’t mind summer ending though; I am SO excited about Jasper starting kindergarten—even more than he is!

We are also ramping up to begin fundraising for Hike for a Cure. Pete will climb Half Dome again on September 30 and we hope to raise even more money than we did last year. These funds have directly impacted Ivy and her treatment: the meeting we attended at Stanford was paid for by H4AC funds and it was our conversations with the doctors there (from Houston and Toronto) that drastically changed Ivy’s treatment from high-risk Ara-C/2-cda to something much milder, allowing us to be freed from hospital life and Ivy to start being a normal three-year old. We are preparing a brochure to be sent out, but if you’d like to donate NOW, you can click on the Hike for a Cure link below to donate. Click on “Sponsor Hiker,” then search for Peter Schoenberger.

Thanks for reading…as Ivy would say, “Bye-bye, alligator! After awhile!” Boy, does she get grins with that one!

Love Allyson, Pete, Jasper and Ivy

Friday, July 27, 2007 6:52 PM PDT

Pete and I went to Harrison’s funeral today, a Catholic mass in San Francisco. It was just sad, sad, sad. They fought so hard for so long and this is how it ended for them. There were a couple other families from 5 South there and many of our favorite nurses, so it was a bittersweet little mini-reunion. Of course, they were all thrilled to hear how well Ivy is doing.

And Ivy is still doing great. We don’t like the prednisone days (this being one of them), but when we see her riding her tricycle down the street or laughing one of her belly laughs, we know how lucky we are.

There was a bit of concern about her potassium being low this week. I had THREE messages from one of the clinic nurses telling me to recheck it, but I didn’t get the messages until after clinic closed, so I didn’t know how low it was. It turned out to be only a little bit low and when they rechecked it the next day at the Day Hospital it was totally fine. Her bicarb is a bit low too, but Dr. G didn’t seem the least bit concerned, so we aren’t either.

We spent a record four hours in the Day Hospital yesterday and that was trying for both of us (it doesn’t help that it was the first day of her prednisone pulse either—we were both cranky). We didn’t even start the chemo until noon, and we had arrived at 10. It had something to do with the Zofran not being sent up from the pharmacy…

But all things considered, we are not complaining. Children’s Hospital saved Ivy’s life and we are forever grateful to them.

Have a wonderful weekend.

Love Allyson, Pete, Jasper and Ivy

Thursday, July 19, 2007 10:39 PM PDT

We are very sad today, learning of our pal Harrison losing his difficult battle against cancer. He fought hard for so long and he must have been so tired, being only three years old. I guess technically it wasn’t even cancer that took him, but rather complications from his BMT. Pete and I are both just so saddened and heartsick for his very dear parents—they never left Harrison’s side. They are a special family and they so do not deserve to have this horrible thing happen to them. There is probably not a mother or father who has spent time on 5 South who hasn’t wished they could trade places with their ill child and take all their pain. Now I see how that works…Harrison is no longer hurting, but his parents are in the worst pain ever. I’m sure none of us parents wanted that kind of cruel trade. Anyway, tonight you could offer up a special prayer for O.J., Stephanie and baby brother Lucas…

Ivy, on the other hand, is doing really, really well. She had one of those great appointments today where there was not a single remarkable thing going on. Bloodwork looks good—the bicarb is back to normal. Weight is up a smidge. Liver and spleen are totally fine. She’s happy and energetic.

Well, okay, a caveat…she’s happy until we start the prednisone pulse. She likes taking it (weirdo), but it really does a number on her mood. Sometimes she’ll sit there and sob for no reason. She screams a lot. She’s mad. So THIS is the ‘roid rage that everyone’s been talking about…We did not experience this with the first and second go-rounds of prednisone. Luckily, her mood stabilizes almost immediately after stopping the pred, so we only live half the week with a lunatic (and don’t get me wrong, we love this lunatic like crazy and will GLADLY suffer these moods if it means she is winning her fight).

On Saturday we are going to a birthday party, for a little girl named Katie, who, as you may recall, in 2005 asked her party guests to donate to the HAA in honor of Ivy in lieu of any gifts for herself. Well, this year Katie is doing it again. We will graciously accept this offer, knowing that it may very well be Katie’s eighth (I think!) birthday that funds the grant that finds the cure for LCH. Thank you, Katie!

That’s the news from Oakland…have a great weekend, everybody. And remember to be thankful for every single healthy child in your family. It’s a blessing.

Love Allyson, Pete, Jasper and Ivy

Friday, July 13, 2007 5:02 PM PDT

Again, too much happens in a week and it’s hard to cram it all into one cohesive update…we’ve had a birthday (Pete), food poisoning (me), a kindergarten assessment (guess who), and chemo (guess who again).

We spent almost four hours at the hospital yesterday. The chemo runs over two hours, but there is so much waiting around, plus a trip to the pharmacy. Every time we go we run into at least one 5 South alum, which is very, very nice. For us and most of them, it’s a good thing to be seen in the Day Hospital—it means we have graduated from Big, Scary Chemo or Big, Even Scarier Transplant to something much less toxic and frightening (I borrowed the phrase “Big, Scary Chemo” from another mom who writes a Caringbridge page). So yesterday we saw three of our buddies from 5 South, including one sweet little girl who was there FOREVER and has FINALLY been able to move on.

A very weird coincidence: I found one of my high school classmates working at CHO yesterday! Bear in mind, our high school is 500 miles away and we graduated 21 years ago! Also, note that she was the homecoming queen and valedictorian—and wouldn’t you know it, yesterday was the day I didn’t wash my hair and later found out I had a very small piece of cilantro in my teeth. Some things never change. So oddly enough, we both live VERY close to CHO, have boys starting kindergarten this fall and have younger daughters. Anyway, small world…we hope to have more time to chat during one of Ivy’s upcoming visits.

Ivy’s counts are great. I already knew her platelets were fine, because earlier in the day she fell off a swing and got a bloody nose, which stopped bleeding in a very timely manner. The one thing we are watching is her carbon dioxide, also called bi-carb. The past three weeks have shown it to be slightly low indicating that her blood is slightly acidic. This can mean blood infection, but obviously she does not have that. It can also be from having diarrhea (losing too much bicarb through the GI tract, I guess). Dr. G thinks this is the case, agreeing with Dr. R’s opinion from last week. And yes, Ivy is still having loose stools, but only 2-3 times a day, so the docs aren’t worried. They seem to think it’s from the chemo. I am not so worried either—it is VERY different from her LCH stools. They’ve also checked for blood and it’s always “hem-negative.”

Ivy’s latest accomplishment is her perfect somersault. I don’t where she learned to do that (well, probably from Jasper), but she’s a pro now. She’s not so good at judging at whether or not she has enough clearance though…

Jasper’s kindergarten assessment revealed no surprises…we know what he’s good at and what he struggles with. But he did come home with brand new pencils, paper, and books and was all fired up to practice writing his letters. We have such a great feeling about this school!

My re-entry back into work has been smooth and relatively painless (other than the hustle and bustle of getting four people out of the house in the morning). I am working three days a week; the other two days have medical-related events each week. Of course, people are happy to have me back and they ask, a little hesitantly, “How’s your daughter?” Then you can see the visible relief when I say how great Ivy’s doing. And so that reminds me of how thankful Pete and I are (as is everyone) that Ivy is doing so well. How did we get to be the lucky ones? Why does Ivy’s disease respond so well to treatment? Why does her little body tolerate chemo so well? (I add this last part after hearing of another LCH warrior, Ossie in Georgia, who is NOT tolerating the chemo, and the docs just don’t know what to do next). Also, I think of a little boy we know from 5 South who is fighting so hard right now. It’s not his cancer that’s getting him, it’s complications of treatment. He is in our thoughts constantly. So we know that for whatever reason, we are very fortunate and have much to be grateful for. We have our Ivy, growing up and thriving.

When it rains, it pours, eh? This got to be very long. Thanks for reading.

Love Allyson, Pete, Jasper and Ivy

Thursday, July 5, 2007 1:33 PM PDT

Just another no-news-is-good-news update…we’ve been busy with birthday parties, a quick trip to Lodi to see Nana and Gramma, fireworks, and settling into the new house.

Ivy is in good shape—her fat lip is gone and the fever has stayed away. She had her methotrexate today and we are back on the three day prednisone pulse.

She also had her very first swimming pool experience on Sunday. With the Broviac, it is generally recommended that she not swim, but since they allow it at Camp Okizu (in a lake, no less!), we thought it would be okay. And it was. Ivy was delighted, grinning the entire time. We did everything they do at Camp Okizu: covering the entire Broviac with Tegaderm, then doing a dressing change as soon as she was out of the pool. It was a neat experience for all of us!

Tomorrow I go back to work after five months away. That will be strange!

All for now…still so much to do!

Love Allyson, Pete, Jasper and Ivy

Friday, June 29, 2007 11:05 PM PDT

^^^^UPDATE #2^^^^
We made it to the birthday party, albeit more than an hour late. But we are free and that's what matters!! Nothing grew from the blood cultures, which is great news. Dr. W said the fever must have been from the Ara-C (rare at this low dose), but I think the fat lip and the fever are connected somehow. We'll never know...C. diff is negative also; so what's causing the diarrhea? So frustrating...

~~~~UPDATE~~~~
Dr. G will not let us go home today; he said because Ivy was in such bad shape last night, that they really need to see if the culture grows something. I told him we really need to be released by 10 am tomorrow for our friend's birthday party (priorities!) and he said he'd talk to the weekend attending doc to see if that was possible. Ivy seems a little sad to be here, though she offers brief smiles to her old friends (and there are many of those!).

Believe it or not, I am updating from 5 East…Ivy was admitted late last night with a fever of 103.6. They took cultures from her Broviac and administered one of the broad-spectrum antibiotics right away. The good news is that she has not had a fever since, so we are hoping to be released today.

One very mysterious thing is that Ivy’s fat lip is back, with no injury that we know of. She woke up in the middle of the night Thursday crying, saying her mouth hurt. I didn’t turn on the light to see, but in the morning it was very definitely swollen. She looks EXACTLY like she did a month ago, with that slow-to-heal mouth injury. Very weird…

Also, Ivy’s diarrhea came back two days after stopping the Flagyl, so we are testing for C. diff again—not sure how long it will take to get those results back.

Ivy had her Ara-C and vincristine in the Day Hospital yesterday. Jasper came with us, which was lucky, because his good friend Kassandra was there too (she is a sibling of another patient).

And yes, we did move to our new house on Sunday. It’s great to be in the new place, but we did a really hasty job and still have lots of odds and ends at the old house (including the computer!).

That’s our quickie update…thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Friday, June 22, 2007 4:50 PM PDT

Another week down…Ivy got her methotrexate yesterday. It’s the same dose she got all through 2006, so we don’t expect anything strange from it. She is still eating a tremendous amount, but didn’t gain any weight. Dr. F said he could feel the very tip of her spleen, which is mildly concerning—I don’t know how subjective that is. Last week Dr. G did not mention feeling her liver or spleen, which is exactly how it’s supposed to be. But maybe Dr. F is more sensitive, or maybe Ivy was in a different position…?

We also found out that one of our beloved clinic nurses is leaving and we are sad about that.

We did get to see one of our buddies from 5 South though and that was a nice treat (he was in clinic also).

More Ivy news: she has taken it upon herself to be potty-trained! Out of the blue and successful every time. We had to make an emergency run to Target yesterday for Dora underwear! We are so proud of this girl—even nasty LCH can’t hold her back!

We are proud of Jasper too…his teacher told me that he raised his hand during circle time to announce that his sister would not need to go in the hospital ever again and that he was very happy!

We are moving this weekend, which is very exciting, but also a little absurd, considering we have not packed. So I don’t know when the next update will be—we’ll have to get everything hooked up again. But hopefully there will be nothing to update…

Thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Monday, June 18, 2007 3:29 PM PDT

Ivy had a great birthday! We had a very casual family party at the merry-go-round on Saturday. Auntie Jaan made a BEAUTIFUL pink kitty cake that Ivy had requested several months ago—one of these days I’ll post a picture of it. Ivy was so happy all day long; it was really a wonderful day for all of us, made extra-special by the fact that four months ago we didn’t know if Ivy would even see her third birthday.

The Flagyl is working; Ivy is having normal stools once again. She hates taking her meds, but a big benefit of the prednisone is her HUGE increase in appetite. No more TPN for her, that’s for sure!

Tomorrow we draw labs, but I don’t expect anything but improvement. Ivy’s cheeks are nice and pink and her energy is good. Her eyelashes and eyebrows are growing back in and she looks very pretty. On the Ivy front, all is well!

Our house is ready to move into, so now our big focus is packing. I can hardly believe it.

Thanks for all the birthday messages, phone calls, emails, cards and packages. Ivy loved them all!

Love Allyson, Pete, Jasper and Ivy

Friday, June 15, 2007 0:14 AM CDT

I’m really happy to report that Ivy has C. diff! And I’m not kidding. I am very relieved. We took in a diaper sample last week and got the news today. This explains the non-stop diarrhea. C. diff is a bacteria that a normal gut usually keeps in check, but being on antibiotics can let it get out of control. So, ironically, they treat it with more antibiotics. Ivy is now on Flagyl for ten days, but so far she’s vomited up her first two doses.

We had a LOOOONG and busy day today—Jasper to school, Ivy to day hospital, Mama to pharmacy, Jasper to dentist, then to Jasper’s new school for paperwork, then to the paint store, then to our new house. We ended on a bright note: dinner with friends in our new neighborhood. But the day took a toll on Ivy; she fell asleep alone in bed with very little coaxing about an hour earlier than normal.

Day hospital was fine. We had a “suite,” which is a nice way to say we were stuck in isolation due to the C. diff. We were there a total of three hours. The nurses are nice, you get a free lunch, and if you’re NOT in isolation, there’s a playroom. We will be there 13 times in the next six months.

Ivy’s counts are pretty good. Platelets are totally normal, and white and red still a little low, but climbing steadily. They don’t expect this chemo to affect them too badly. The dose of Ara-C is something like one-fiftieth of the amount she was getting.

We had a bad experience with the prednisone though. For some reason the outpatient pharmacy carries Orapred, a decent-tasting prednisone, but the hospital pharmacy does not, so Ivy had to have a pill crushed up with grape juice, which did not go down well. In fact, you could say she was traumatized by it (hence, later throwing up the two doses of Flagyl). So we are behind in both our oral meds, but maybe after a good night’s sleep, Ivy will tolerate them better.

I heard that some people had sent birthday cards to Ivy on 5 South, so that was a good excuse to go visit, even though Ivy is barred from the floor until the C. diff clears up. I went alone and saw a couple of the favorite nurses, but none of our patient friends. (And, yes, Ivy did have one piece of mail waiting for her—we’ll go back next week for the rest, another good excuse to visit!)

So now we start this next outpatient phase of our lives…we have spent SO much time in the outpatient building at CHO that it feels like coming home again.

All for now…in case I don’t update in the next few days, I want to wish my dear Ivy a VERY HAPPY THIRD BIRTHDAY!!! And to Pete and all the other devoted dads out there, happy Father’s Day!

(By the way, Jasper’s teeth are in great shape, just like the rest of him!)

Love Allyson, Pete, Jasper and Ivy

Tuesday, June 12, 2007 5:17 PM PDT

Our big news is that we are not in the hospital. Our BIG news is that we don’t expect to be there any time in the foreseeable future! We were set to be admitted yesterday, but when I spoke with Dr. T around 11 am, he hadn’t heard from Dr. Weitzman and was not ready to proceed with another round of the scary Ara-C/2-cda. He called me a few hours later to say that he finally made contact with her and the new plan does not include inpatient chemo AT ALL!!!

For leukemia patients, they have phases of treatment called induction, which is hard-core inpatient chemo, then consolidation which is milder and usually outpatient, then maintenance which is quite mild and often taken orally. So Ivy will be doing something similar; we have already completed “induction,” and Dr. T believes Ivy is in a solid remission. So now we go on to “consolidation.” For Ivy it will consist of Ara-C, vincristine and prednisone on the odd weeks, and methotrexate and prednisone on the even weeks. This will continue for 24 weeks. We are not happy about the prednisone, of course, even though Ivy has tolerated it well in the past. The good news is that Ivy has had all of these drugs before (except vincristine, but that is a close cousin to vinblastine which she’s had LOTS of) and she tolerates all of them well. The Ara-C is a lower dose than what she had been receiving in the hospital.

THEN, after the 24 weeks, Ivy will begin maintenance, which will probably continue for two more years. It will include 6-mp and something else, which I can’t recall at the moment—maybe methotrexate. So Ivy will be on chemo well into kindergarten, poor girl.

We are rather stunned at the new plan and are having to adjust our lives to not being in the hospital. Even though we’ve been home for almost two weeks now, Ivy’s suitcase is still not unpacked. We had assumed we’d be continuing our hospital life. In February we had to adjust to living in the hospital; now we have to remember how to not live in the hospital. It’s a weird feeling. We had also assumed Ivy would have her birthday in the hospital, but that’s not true either, so we are having to make new plans there.

And there is a bittersweet feeling too; every time we left 5 South, we knew we’d be back to see our pals. Now we won’t and that’s very sad. I really want to know how everyone’s doing! We really developed a little community up there and we miss it.

We are this close to being ready to move—it WILL happen this month. Thanks to our painting crew for helping us push forward!

Ivy starts her outpatient chemo on Thursday; the next day she turns three. Wow!

Love Allyson, Pete, Jasper and Ivy

Thursday, June 7, 2007 3:32 PM PDT

Ivy’s all set for chemo Monday—her counts are all in the range they need to be: platelets over 100K, ANC is over 3000 and her hemoglobin is holding steady at 8.0 (Monday’s labs showed 7.8). We still don’t know what that chemo will be, more of the same, or something lighter. Dr. T emailed Dr. Weitzman, but I don’t know if they’ve connected or if anything has been decided.

Ivy is still having diarrhea. Now I’m not so sure it’s viral. It’s very mucousy (sorry to be so graphic), but varies from bright yellow to brown to clear. We are going through seven or eight diapers a day. Yesterday I brought in a sample to the lab, so they are checking for C. diff and rotavirus. I don’t think either one will come back positive and I really have no idea what we’re dealing with. Trying not to worry too much, because other than that, Ivy is fine.

Jasper is fine also; I had a conference with his teacher on Tuesday and she says he’s improving in every way and is definitely ready for the big leagues of kindergarten. His teachers have always been concerned about how he deals with Ivy’s illness, but they say he really does seem to be handling it very well. Jasper also had his kindergarten check-up yesterday and he is normal and healthy in every regard. But we already knew this, of course.

I didn’t get to rave enough about the Hike for a Cure reception and family day at Stanford this past weekend. Pete and I really enjoyed meeting the newly diagnosed families, as well as seeing the families we had met previously, including the father of a little girl who finished five rounds of Ivy’s chemo regimen and is now doing very well. We hope Ivy follows in her footsteps!

The longer we are home, the harder it is to face being back in the hospital, though once we are there, it is relatively fine. We will paint some more this weekend (and a belated thank you to Beth for painting last weekend—I didn’t know you were there too!). We are so close to moving in, but unfortunately it will not happen before the next hospital stay. Ah well, one day at a time, as I’ve heard about a thousand times since Ivy relapsed.

We are having perfect weather for which we are thankful; we are trying to soak it up before the next weeks of being cooped up on Five South!

Love Allyson, Pete, Jasper and Ivy

PS: Oh gosh, right after I posted this, I checked my email and learned that our histio community has lost another sweet boy to LCH. You can offer your support at www.caringbridge.org/visit/wesleypusey. I am so sad for Wesley's parents.

Monday, June 4, 2007 10:03 AM PDT

I shouldn’t go five days without an update, because that’s just too much to write about!

Ivy’s counts were good on Friday—ANC of 4000+ (!), platelets at 74K, and hemoglobin the exact same as when we left CHO on Wednesday, 8.2. So we didn’t have to worry about transfusions all weekend. I’ll be doing labs again this morning when she wakes up; of course, we hope that all her counts have continued to climb.

But she’s still having diarrhea and on Friday was pretty under the weather. It seems like a viral thing, but it could that she’s still recovering from the chemo, I suppose. On Friday night we were supposed to take both kids to the Hike for a Cure reception at Stanford, but at the very last minute decided Ivy would be better off not doing that—so thank you very much to Grammie for rearranging her birthday plans so that the kids could stay with her!

I gave my speech at the reception and I dare say, it was a hit. People came up to me afterwards with tears in their eyes saying how moved they were by Ivy’s story. Pete did a nice job with his impromptu words about how grateful we are for Hike for a Cure. Then Pete and I were honored for being the biggest fundraisers for H4AC 2006. Anyway, it was a great night.

Then, Saturday was the informational meeting and we spoke to Drs. McClain (Texas Children’s) and Weitzmann (Toronto Sick Kids) about Ivy and they are on the same page—since she’s responded so well to this hard-core chemo, maybe we can cut back a little for the next couple rounds. BUT, they both recommend a long-term maintenance plan for her: 24-36 months of oral chemo at home. Holy cow! Bear in mind that Ivy would be one of the first in the world to be treated this way, so no one really knows what will work, but the theory is that LCH can burn itself out and you just need to keep it at bay until it does.

I will be calling Dr. Torkildson sometime today with this information. As Dr. Weitzmann pointed out, it is better to talk physician-to-physician, so I hope they can make contact this week before Ivy is scheduled to begin Round 4 on Monday.

I’m trying not to get my hopes up about not living at the hospital for the summer, but wouldn’t that be great?!

We got lots of painting done at the new house, thanks to the DeZeregas and our niece Emma. We’re not quite ready to move in, but gee, it’s getting close!

Thanks for reading…

Love Allyson, Pete, Jasper and Ivy

Wednesday, May 30, 2007 5:39 PM PDT

CT scan is done, platelet transfusion is done, and we are home!

Pete said the sedation went okay. Dr. T's preliminary read of the scan is that Ivy's spleen is a normal size, but still has a couple of infarcs (dead areas, as I understand it), though they look to be healing. Her liver is still enlarged, but this could be due to many reasons, like being on TPN. When he palpates her liver, it is nice and soft, as it should be. They did not scan the lungs today, because they did that a couple weeks ago, when they were looking for the cause of her fevers. Also no head, because her skull lesions had completely resolved on the last scan. We are trying to limit the amount of radiation Ivy is exposed to!

Ivy and I have already been on a walk through the neighborhood to the produce market, while Daddy and Jasper napped on the couch. Ivy is thrilled to be home, excited to see her kitty, and looking forward to a pesto dinner!

We'll be drawing labs Friday and it's not unlikely that she'll need a transfusion this weekend. But one day at a time...

Thanks for the cheerful messages in the guestbook!

love Allyson, Pete, Jasper and Ivy

Tuesday, May 29, 2007 1:00 PM PDT

They were all set to send us home today, but we actually asked to stay another day. I know it sounds perverse, but since Ivy has a CT scan tomorrow morning and it’s very possible she will need a transfusion also, we just decided to wait it out. I told Dr. T that he must think we’re crazy, but he said no, it happens more frequently than you might think.

I also just discovered a bit of blood in Ivy’s diaper, so the nurse will let him know…I’m not sure what to think about that. Her stools definitely have not been normal, even after finishing all of the antibiotics.

Ivy’s ANC is over 3000 so they are stopping the GCSF. It is a relief to not have to do that one at home! Her platelets are in the 50,000’s, down from 70K yesterday. Her hemoglobin is 8.4.

We are tentatively scheduled to begin Round 4 on June 11. It was difficult choosing a date—many constraints and considerations—but this will give us two weekends at home and a SLIGHT possibility of being home for 4th of July week, when Pete’s off work. So Ivy will have her birthday at CHO and that’s okay. I don’t think she’ll mind a bit.

All for now…

Love Allyson, Pete, Jasper and Ivy

PS: New photos!

Monday, May 28, 2007 12:06 PM PDT

We are in the stage we like best, where the docs are eliminating the meds one by one, the TPN is being cut back, and Ivy actually has an ANC! Yesterday it was about 700, today it’s up to 900. We can’t stop the GCSF until it gets to 1500, so that’s probably another day or two. Ivy spends most of the day off the pole and it puts all of us in a much better mood.

Ivy’s had two nosebleeds in the last two days, despite platelets being in the 30K’s. Today they are way up over 70K, so we’ve probably seen the last of the nosebleeds for awhile. At least we got through them with no nose-packing!

We’d been counting on going home tomorrow (Tuesday), but Dr. T just said it would be tomorrow OR Wednesday, depending on how her platelets and red cells recover—they are definitely lagging behind the whites. They checked the reticulocyte count, which indicates if the marrow is ramping up to produce more cells, and it’s not. This is actually good news, because if her body was making new cells and she was still needing transfusions, this would indicate that her body was eating them up (VERY bad!).

Dr. T asked a lot of questions about Ivy’s asthma; it’s mystifying why she can go months without a flare-up, but then when she gets it, gets it bad. He’s wondering about family history of allergies, asthma and eczema. After we get through this LCH business, he wants her pediatrician to refer her to an allergist, to see what her asthma triggers are. I told him the hospital seems to be one trigger—somehow she comes in with clear lungs, then ends up needing treatments a week or two later! He and the fellow laughed, but the fellow pointed out that the hospital could have its very own triggers not found in the outside world.

We don’t actually know when we’ll start the fourth round. The docs seem to think we don’t have to stick to that four-week schedule and that it would be good to have a little time at home. Maybe we can even get moved! At any rate, it seems likely that Ivy will spend her third birthday (June 15th) in the hospital, but that’s okay. We had assumed that would be the case and some of her best buds are here anyway.

We’re having a mellow Memorial Day…Pete is painting the new house today, the kids are running around 5 South like they own the place, and I’m just hanging out, I guess. Thank you for reading about our girl!

Love Allyson, Pete, Jasper and Ivy

Friday, May 25, 2007 10:53 AM PDT

We had a GREAT day here at the hospital yesterday, until 6:30 pm, when the nosebleed started. Ivy is completely traumatized by nosebleeds now, after that awful one in March that wouldn’t quit and she had to have her nose packed. So she was screeching while we pinched her nose for a good hour. They got platelets into her in record time, which helped. But she had to have a dose of Ativan, because she was so freaked out. And that only helped a little. We didn’t have to resort to nose-packing, thank goodness and after 2 ½ hours, the bleeding had stopped and Ivy had mostly calmed down.

So obviously, the holding off on the transfusions wasn’t the best idea (or rather, it was a good idea, but it just didn’t work!). Ivy also got blood around midnight last night. Her hemoglobin was low anyway and the copious blood loss from her nose only exacerbated the problem.

But like I said, we had a great day yesterday. By a happy accident Ivy was off her pole for several hours—her TPN line got disconnected and they decided it wasn’t worth the effort to rehang it, so she was free for awhile! We had wagon rides for a good half hour, with Ivy, Elsa and Justine riding, while I jogged, pulling it. Josh, in his wheelchair (not that he needs it), grabbed on the back of the wagon for awhile, so you can imagine what a good workout I got!

The nurse just handed me copies of Ivy's labs: white count is .4, hemoglobin 7.8 (was 5.something before transfusion last night), and platelets 43K (yay!). Ivy will have a CT scan on Wednesday, of her pelvis and abdomen. Pete will be with her—I can’t bear the thought of that sedation nightmare again.

It’s time for a shout-out to three wonderful moms who have stepped up to help us out. They’ve each taken a day to be responsible for picking up Jasper from school and bringing him to the hospital—so nice that we don’t have to scramble each week to figure this out. Thank you, Paula (mom to Eli), Adria (Leo), and Kira (Liam)! (An added benefit is that I get to visit with them when they bring Jasper!)

Thank you for reading…

Love Allyson, Pete, Jasper and Ivy

Thursday, May 24, 2007 12:34 PM PDT

Everything is moving in the right direction…no fevers, white count coming up (to 0.3, still very low), no oxygen at night. So they are starting to eliminate the antibiotics, one by one, but since they won’t finish until Monday or Tuesday, they will not discharge Ivy until Tuesday.

She’s at the transfusable level for both blood and platelets, but the docs want to see how they are trending, so they will not transfuse at this point.

IF we do a fourth round, it would start on Wednesday, but they said we could delay for a few days if we want. So we’ve asked to start next Sunday, so we can all attend the histiocytosis conference at Stanford next weekend. This conference is the result of the tremendous fundraising we did with Hike for a Cure last fall (with your help!). They’ve asked us to speak, and though neither Pete nor I is the greatest public speaker, we’ve agreed. (Yikes!)

So now we are just biding our time…a few days at home will be very welcome!

Love Allyson, Pete, Jasper and Ivy

Wednesday, May 23, 2007 4:24 PM PDT

Ivy’s white count today is 0.1, which is a tiny step forward. No guarantees that it will continue trending upward, but we’ll take it! She may have a platelet problem called allo-immune something or other—basically, we wonder if her body is rejecting the platelets she receives, since she barely gets a bump upward and needs a transfusion every day almost. Dr. W said it happens in 10-20% of patients who receive multiple platelet transfusions. So what they do is cross-match the platelets and try to find a good match. He said we may find 3-4 people in the community who match. This is all speculation at this point however…

Her fevers are mostly gone…and she hasn’t needed Tylenol (good thing, because oral meds cause her great anxiety and she usually throws up).

Her lip is still swollen and purple, but doesn’t seem to cause her pain.

Right now she gets half an hour off her pole, because they had to put TPA in both her lumens (they had issues with the blood draw this morning). Anyway, it’s amazing how her spirits lift being “disconnected”—she took off running as soon as she was able. There’s a bunch of kids racing up and down the hall right now.

We had a fun afternoon here with one of the nurses (a man) letting the kids shave his head today. Actually most of the kids were too shy, so the moms did a lot of it (including me!).

We will not be going to Camp Okizu this weekend and are extremely disappointed. We will try to go sometime in the fall—they were very accommodating in that regard. Even if Ivy were discharged on Friday, we’d be schlepping so many meds that it would not be very relaxing.

Thanks for reading…

Love Allyson, Pete, Jasper and Ivy

Monday, May 21, 2007 1:01 PM PDT

I’ll try to get in a quick update before Ivy demands me back in the playroom…Ivy has many weird little things going on…fevers, swollen mouth, rashy things, diarrhea.

The swollen lower lip started on Saturday afternoon. Everyone’s first thought was infection, maybe a reinfection of her mouth wound from the previous weekend. Then later they thought it was a reaction to the platelets she was receiving (it’s not uncommon for patients to require “pre-meds” before receiving blood products, though Ivy has never needed this before). Here we are two days later and it’s still swollen and no one knows what to think. They added merepenem, a super strong and newish antibiotic to her regimen, while taking her off the ceftaz, in case it’s an infection. They are now also pre-medding her with platelet transfusions. Ivy has another skin irritation on her neck, which they normally would think is yeast, but since she’s on a high-dose of antifungal, that doesn’t make sense.

She also may have had a reaction to the vanco yesterday, again, not uncommon. It’s not an allergic response, but they still premed with Benedryl.

And she has major diarrhea—so much that every night I take home at least three pairs of pants to wash. My assumption was that it’s from all the antibiotics she’s on, but this morning, they said that all those antibiotics can actually lead to a bacterial infection in the gut, so they are testing for that. Then, of course, the treatment would be yet another antibiotic!

The fevers continue as well. Saturday night she ran a low-grade fever all night, but I think it went away on its own.

Her sats get low at night, so gets oxygen all night. During the day she’s fine. It is asthma.

It was this time last cycle where we were surprised by the doc telling us that Ivy all of a sudden had an ANC and that we’d be going home, but that’s not happening this time. Still no white cells in sight. We were supposed to be going to Camp Okizu this weekend, but that doesn’t seem likely. We are very disappointed.

We’ve been spending a lot of time with our friends on the ward. I am filled with such a deep affection for them. If you don’t mind, you could send some positive thoughts and good vibes to Harrison, Ethan, Josh, Justine, Lance, Enrique (and his 5-year-old sister Kassandra who donated her marrow to him on Friday), and Riktor. All these kids are so sweet and friendly and I can’t bear the thought of any of them not making it.

Thanks for checking in…

Love Allyson, Pete, Jasper and Ivy

Saturday, May 19, 2007 1:25 PM PDT

Just a quick update to say that Ivy is stable, more or less. Her fevers continue; in fact, they seem to be increasing in frequency slightly. They mostly occur at night. Yesterday they did a nasal swab to check for viruses, but our best guess is that she is still fighting the strep, despite the negative blood cultures.

Ivy’s asthma (or what we are guessing is asthma) is very bad right now. At night her sats are in the low 90’s, so they put her on oxygen. During the day, when she’s upright and active, her numbers are better. They are giving her albuterol four times a day now. Sometimes they hear crackling, sometimes they don’t.

So here we are managing infection, asthma, and fevers, and mostly forgetting about the real reason we are here: Langerhans cell histiocytosis! No one has been able to tell us what’s in store for Ivy—another round or two or three? Or something else? It is frustrating.

That’s the scoop. She’ll be getting both blood and platelets sometime today. She continues with the four antibiotics, the antifungal and the GCSF. And we wait (im)patiently for her white count to return.

Thank you for checking in.

Love Allyson, Pete, Jasper and Ivy

Thursday, May 17, 2007 9:14 PM PDT

Happy news! The CT scan was clear! No signs of fungus, thank goodness. Such a relief when we heard that around 8 pm tonight.

The CT procedure itself was awful. Ivy is impossible to sedate now--they used the maximum amount of drugs they could and she was still awake. I had to hold her hands over her head, and even though I was wearing a lead apron, am sure I got more than a good dose of radiation. Then, just like last time, Ivy coming off the drugs was miserable--whiny, crying, fighting, very, very unhappy. This lasted an hour, I think.

And one funny story from a couple days ago: Jasper was alone in the room, while Ivy and I were in the playroom. A PCA (Patient Care Assistant, who does the vitals, makes beds, etc.) whom we had never met before came in. English was definitely not her first language. She thought Jasper was the patient, so she tried to do his vitals. He ran away from her. So he came running into the playroom, saying quite frantically, "Mama, Mama, there's a doctor looking for you!" The PCA followed him into the playroom, saying, "You don't have to be afraid! Here's your mama! I just need to get your blood pressure." I had to explain that Ivy was the patient, not Jasper! Jasper and Ivy didn't seem to find it as funny as I did.

And so we carry on...today was a very stressful day and I'm glad it's over.

love Allyson, Pete, Jasper and Ivy

Thursday, May 17, 2007 10:41 AM PDT

Ivy had two negative blood cultures in a row, which is very good news. She continues to spike fevers, however, so they did another culture around 3 am. It usually takes several hours, up to 24, to see if anything grows. Yesterday Dr. W said that the antibiotics appear to be keeping the strep infection (not the type that causes strep throat, by the way) under control, but you really need an immune system to eradicate it completely. So we continue to wait for that…

An interesting thing I learned is that they can find out what drugs the bacteria is sensitive to in the lab. So they discovered it is resistant to erythromicin, but susceptible to vanco and ceftaz, which she is already on. It's so cool that they can figure that stuff out!

We asked the docs not to come in this morning until Ivy was awake (the princess now sleeps in to about 11 am!), but heard their discussion outside the door (yes, Pete had his ear pressed to the door). So what I’m reporting is hearsay, but here goes:

Because Ivy has been febrile for four days, “it is imperative to increase the microfungen.” They have been giving her a prophylactic dose up until now. It also sounds like they want to do a chest xray or CT scan to see if there’s pneumonia—we heard the resident say “the parents are concerned about radiation.” But obviously a fungal infection is far more worrisome than a little bit more radiation exposure.

They are also talking about increasing the TPN to 24 hours, because Ivy is hardly eating at all. The good news is that she is still pretty happy and active. This is a sign that she’s not THAT sick, I guess.

I will update if anything changes, or if Ivy gets a CT or xray.

Love Allyson, Pete, Jasper and Ivy

Tuesday, May 15, 2007 2:04 PM PDT

They’ve identified the bacteria—it’s viridans streptococcus. The meds she’s getting are appropriate for that bug, so they won’t add anything unless it proves to be resistant, I guess. It’s likely it came from the throat (not sure if this is the strep in strep throat, though). Ivy’s had a couple more fevers, but once the Tylenol kicks in, is in good form. From what I can tell, the docs seem to think the infection is under control. Fingers crossed, prayers, good energy, positive thoughts that this is really and truly the case.

We are still waiting for a white count, because that definitely will help her fight this thing. Unfortunately we don’t expect one for several more days. Her hemoglobin is holding in the normal range and her platelets are low, but not low enough for a transfusion. Her breathing is still abnormally fast even when she’s not febrile. This is an ongoing mystery with Ivy.

That’s all I know at the moment. For now we are relieved that Ivy is happy in the playroom, so obviously not feeling too bad. Thanks for the supportive messages in the guestbook.

Love Allyson, Pete, Jasper and Ivy

Monday, May 14, 2007 2:23 PM PDT

Scary, scary night with Ivy…the worst we’ve had. (See the update from midnight last night for the lead-in.)

So many things happened that I’m sure I won’t remember all of them. Plus I don’t understand the significance of everything either…

The fever stuck around for awhile, so perhaps Ivy did throw up some of the Tylenol after all. Her pulse ox was at 91%, so they started giving her oxygen. Her heartbeat was extremely high, sometimes topping 180 bpm. And her breathing was the most rapid and labored that I’d ever seen it. They hooked her up to all the monitors—heartrate, pulse ox, breathing, blood pressure—and I knew the resident was very worried about her. She spent a lot of time in the room with us. They redid Ivy’s blood gases (earlier, with the first fever, they had found that her blood was acidic—not sure of the entire significance of that, but it can indicate infection, I guess). They drew her labs around 1 am and took a chest xray with the portable machine around 2 am. The resident asked the ICU doc to come up and take a look at Ivy, that’s how concerned she was about how things were progressing. She said, “I don’t think they’ll want to move Ivy to the ICU tonight.” The fact that it was even being considered was terrifying.

The first little bit of good news was that the blood gases and acidity had improved a bit. The chest xray was clear. The fever stayed away. And sometime around 3 or 4 am I noticed that most of Ivy’s monitoring was reporting better numbers. I had not yet slept. Yes, it was a horrible ending to Mother’s Day (but seeing the improved numbers was the best Mother’s Day gift ever).

Around 6 or 7 am, the resident woke me up to report that the blood cultures drawn the night before were indicating a gram-positive bacteria in her blood. This is very bad news. This is how kids die while on chemo—contracting a blood infection that they can’t fight off with a non-existent immune system.

BUT, since the fever has stayed away, we believe that the antibiotics are working. It will take a few days to determine what the bacteria is, but they seem to think it’s streptococcus something-or-other, from either the skin or the throat, which is better than if it’s from the digestive tract. Dr. W said maybe it was from the weird skin on Ivy’s head, possibly from her mouth wound, or who knows? I don’t understand the infection mechanism—how does a mild skin infection result in a serious blood infection?

Dr. W said that last night it was sepsis, but today it’s probably just bacteremia (sepsis being more serious). You can look all this up if you like; I am barely processing it all, having had about four hours of extremely interrupted sleep. Ivy cannot be off the pole today, because they want to keep things flowing through both lumens of her Broviac.

Oh yes, the labs from 1 am showed Ivy needed both platelets and blood, so she got both in the wee hours. Evidently this kind of infection can result in low counts.

It’s now 2 pm and we are in the playroom doing an art project, so that gives you an idea of how Ivy is feeling—not too bad! I am just SO relieved that things are heading in the right direction. Dr. W said we are not out of the woods yet, so we need many prayers and good vibes for Ivy’s healing. Thank you. I will update as things progress.

Love Allyson, Pete, Jasper and Ivy

Monday, May 14, 2007 12:25 AM PDT

Ivy’s got us worried. She’s spiking fevers and with this most recent one was shivering uncontrollably and experiencing the worst tachypnea I’ve ever seen. We gave her Tylenol, which she promptly threw up, and then had diarrhea. We cleaned her up, gave her more Tylenol, she vomited and had more diarrhea. Strangely, though, she seems to have kept the Tylenol down; there was no telltale pink in the bucket. Now she’s still breathing fast, but sleeping. With the first fever, they took blood cultures and added tobramycin and ceftazadine (I have no idea how that one is spelled). Now the resident wants to add vanco—I know she’s worried. But of course, vomiting and diarrhea are often viral symptoms. At least the resident is honest; she freely admits she doesn’t know what’s going on.

And that’s not all. Poor Ivy had a rough weekend…she took a spill on Saturday and injured her mouth. I wasn’t here, but evidently she screamed like she’s never screamed before and there was lots of blood. For the rest of the day Ivy insisted on holding a paper towel to her mouth, even though the bleeding had long stopped. It became comical—she ate with it there, and any two-handed endeavors required her to bring her face down to the level of her hand. If we didn’t feel so sorry for her, we would have laughed.

She got platelets a couple days ago, but her hemoglobin has held pretty well. Her eating is not sufficient, so she’s now on TPN, 12 hours a day.

Until these pesky fevers started happening, my Mother’s Day was great. I spent the early part of the day with Jasper, Jaan and my mom and then we had a Hitt/Schoenberger ice cream party here at the hospital. I hope all the moms reading this had a wonderful day as well.

Last night Pete and I went on a pretty special date, while Jaan and my mom took care of the kids here. Pete’s company took everyone out on a bay cruise, dinner and dancing included; then the boat parked under the Bay Bridge so we could watch the KFOG Kaboom fireworks show. It was the first time in a very long time that we actually had to get dressed up! We really had a fun night—somehow dancing with one’s husband to “Superfreak,” has a way of making one feel that everything will be alright in the end…

Anyway, sorry for such a jumbled update…lots of ups and downs this weekend—really high ups, and pretty down lows. We really hope these fevers are…what, I don’t know. Viral? Is that best-case? Well, we just hope it’s nothing serious. Ivy will probably have no immune system for at least another week. Please keep us in your thoughts and prayers.

Love Allyson, Pete, Jasper and Ivy

Thursday, May 10, 2007 7:45 PM PDT

Ivy’s hemoglobin is normal, for the first time since before Valentine’s Day, I think! This means she is holding on to the transfusion she received the day before yesterday. Yay! Her platelets are down to 30, not yet transfusion-worthy. But her white count is <.1—no immune system to speak of. This is the scary time.

Her head is still red and maybe a little itchy. What’s concerning us are the tiny dark red spots on her scalp—suspiciously similar to LCH. BUT Dr. G says one can get petechiae from scratching, so maybe that’s what we’re seeing. We are trying cortisone cream. Maybe if Ivy stops itching, the spots will go away. Our fingers are crossed.

Ivy’s eating and drinking okay, so she gets to be off the pole all day. She is so independent now, saying, “I be right back, Mama!” before she charges out of the room to find a friend or see what’s going on in the playroom.

Just in case you haven’t spent any time in a children’s hospital, let me tell you, it’s not so depressing as you might expect (once you get used to the sight of bald kids and all manner of scars and I.V. poles loaded up with meds and transfusion products). Most of the time the kids are cheerful and playful. And they are the nicest kids! The staff is also very playful, so it’s not unusual to see the housekeeping staff doing an art project in the playroom or the nurses pulling kids around in wagons. Right now Ivy is sitting at the nurses’ station coloring with one of the nurses. Another nurse is throwing some kind of toy down the hall with 11-year-old Josh. That’s life on 5 South. If these kids weren’t fighting for their lives it might be one of the happiest places around.

So we’re hanging in there…trying not to worry too much about Ivy’s spots, being thankful for how great she’s doing in every other regard. Pete and I got to go out to dinner last night, while Grammie stayed here with Jasper and Ivy. A nice respite! We went to Pizzaiolo, walkable from CHO, at Telegraph and 51st. We recommend it to all of our local readers.

As always we thank you for checking in on Ivy and being such great cheerleaders!

Love Allyson, Pete, Jasper and Ivy

Wednesday, May 9, 2007 3:09 PM PDT

I suppose no news is good news, when it comes to Ivy…her chemo finished Monday night, so now we wait the 2-plus or minus weeks until her counts plummet and then start rising again.

She is having diarrhea and a bit of a yeasty diaper rash, but we are staying on top of it. Still no TPN, but it is a struggle to get her to eat enough. TPN may well be in our near future.

They are checking labs every other day. Ivy had a red-blood-cell transfusion yesterday, but so far her platelets are holding (below normal, but far from transfusion level). We don’t expect this to last, however; the chemo is very good at knocking those out!

Ivy is having one weird thing though—the top of her mostly-bald head is bright red. It looks like a painful sunburn, but she hasn’t been outside in a week. And the windows here are UV-blocked. The red head doesn’t seem to bother her. Doctors, nurses and the pharmacist have all examined it and all are mystified. Leave it to Ivy to have an unexplainable skin thing going on…

Ivy is “off her pole,” and is delighting in it—running, running, running! She really is in great shape and we are so relieved.

Thank you all for your prayers and good thoughts coming our way. Ivy and every other kid in this hospital could use them!

Love Allyson, Pete, Jasper and Ivy

Saturday, May 5, 2007 4:26 PM PDT

Nothing major to update…Ivy did not get a transfusion yesterday as predicted because her hemoglobin came up a bit on its own. But today it’s down to 6.6 so she’ll be getting one momentarily. Her platelets are in great shape, but her white count is slowly falling. Nothing out of the ordinary…

She’s had a few Ara-C fevers, but otherwise is in great spirits. She’s still eating a bit, but we expect to be back on TPN any day now.

Pete had a chance to talk with Dr. T this morning (we learn so much more from him than any of the others) and he was very pleased with Ivy’s scan results. He said the fact that her liver is still enlarged does not necessarily mean that it’s LCH—it could be fatty tissue from the prednisone. The only way to know for sure is to biopsy and I know he tries very hard to avoid such invasive procedures. We’ll see what the next scan shows…

Pete and I both finally joined the National Bone Marrow Registry yesterday. They had a drive here at the hospital and it was totally free (and will be until Mother’s Day). Normally it costs about $50. Anyway, I encourage all of Ivy’s fans to get on the registry—imagine how wonderful it would be to actually save someone’s life! (It only took 15 minutes and most of that was paperwork—then it’s a simple and painless cheek swab.)

Enjoy that beautiful weather!

Love Allyson, Pete, Jasper and Ivy

Thursday, May 3, 2007 5:00 PM PDT

We’re back on 5 South and have requested one of the rooms near the kitchen, away from the nurses’ station—they are accommodating us, even though it means spending a few hours in 5318 until 5310 is vacant. It’s very kind of them.

Ivy started chemo last night around midnight. Yesterday afternoon there was talk of not being able to start last night, because there was no cladribine (2-cda) to be found in the hospital (it’s so rarely used in pediatrics). Today the pharmacist (who came up to assist in the clean-up of a chemo spill—more on that later) told me that she actually had to go borrow some from Alta Bates! Nice that hospitals can do that for each other. And nice that they did it for Ivy.

So yes, there was a chemo spill this morning, actually more of a leak. Ivy called me over to look at the blood in her line, which, obviously, should not have been there. It turns out that one of the connections on Ivy’s tubing was loose and some of the chemo had leaked out. Evidently protocol calls for both the charge nurse and the pharmacist to assess the situation and handle it. They brought the chemo spill clean-up kit but ended up not using it. It was a very minor leak (but I was careful to wash my hands VERY thoroughly afterward). They estimated that maybe 20 cc’s was lost and decided that was an insignificant portion of the five-day infusion. Ay ay ay.

Ivy’s hemoglobin has been dropping even before starting chemo—from 8.8 a week ago, to 8.1 on Monday to 7.4 last night. She will most likely be getting a transfusion tomorrow. Her platelets have continued to climb, however. Dr. Golden said that’s odd, but there was another kid earlier in the week who experienced the same thing; he needed a transfusion even before starting chemo. She wondered if it were a viral reaction…evidently some viruses will do that.

And so we march forward…our third lengthy hospital stay. We know the drill—hope for the best, prepare for the worst, don’t sweat the small stuff.

Thanks to the troops for rallying this week with short notice—picking up Jasper, bringing lunch and hanging out. We couldn’t do it without you!

Love Allyson, Pete, Jasper and Ivy

Wednesday, May 2, 2007 4:17 PM PDT

Cough gone? Yes.
Scan done? Yes.
Results? Overall improvement.
Another round of chemo? Yes.
When? Our choice, start tonight or tomorrow. We choose tonight!

That’s the summary--more detailed information below…

Ivy is difficult to sedate. We learned this last time, but today it was horrible. They gave her lots of drugs and she finally fell asleep very agitated. Afterward, she woke up EXTREMELY agitated, crying, kicking, arching her back and fighting everyone. This lasted for about 25 minutes. Then a long nap there in the recovery room. Then she was cranky for the next hour or so. Now she’s napping again.

Dr. T called with CT results: spleen-much smaller, liver-smaller, lymph nodes-totally normal, skull lesions-gone (this tells us they were actually there; we weren’t sure before), lungs-not normal, but consistent with asthma, not LCH. These are the results we expected, except for the skull lesions—we were hoping that those little spots would not have been lesions.

So Ivy will be admitted today sometime (it’s already 4 pm), but we’ll be in an isolation room at first, only because 5 South is full. We hope to move over there as early as tomorrow.

It’s harder to go back this time, maybe because we actually had enough time to get into a bit of a routine at home. We like sleeping in our own beds, with our kitty, not being awakened every hour. We like going outside. We like lounging in our jammies. Ah well, I can’t complain too much—I just read an account of the old Stanford Children’s Hospital, where there were four kids to a room and the parents sleeping bedside had to fold up their cots by 8 am! The rooms on 5 South are luxury accommodations compared to that! (From what I understand, the newer children’s hospital at Stanford is quite nice.)

In our week at home, we actually got some significant packing done, thanks to the motivational skills of Becky and then Nana and Gramma jumping right in. We also celebrated my gramma’s 86th birthday, had a short-but-sweet dessert date thanks to Grammie, had an semi-emergency tooth extraction (mine!), and of course, went on a few merry-go-round rides.

All for now—lots of organizing and packing to do. Thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Friday, April 27, 2007 12:10 PM PDT

I am so incredibly frustrated right now; we got to Children’s at 7:30 am, as requested, only to be told at 8:30 that they wouldn’t do the CT with sedation because of Ivy’s cough. Mind you, this is the same cough that kept us isolated for eleven days. They knew she had it Tuesday when we were discharged. Grrrr. So now there is talk of having it rescheduled for next Wednesday—she is supposed to be starting her third round that very day, so one can only hope that her cough disappears, she has the CT, it is read by the radiologist, and Dr. T can make a good decision in a matter of hours.

We had a chance run-in with him on Wednesday and he is thinking that if the scan shows marked improvement (100%?) that he will switch Ivy to a less toxic chemo regimen. I have no idea what that would be; maybe he doesn’t either.

We are concerned about Ivy’s tachypnea (rapid breathing). It could be asthma, or LCH in her lungs, or LCH enlarging her liver and spleen which are then compressing her lungs. From this symptom alone, it seems unlikely that the scan would show 100% improvement.

Nurse Stacey just called—Ivy’s CT is scheduled for Wednesday at 9 am. It will be read immediately so that Dr. T can make his decision. If Ivy’s cough has not resolved, the scan and chemo will be delayed for a few days and Dr. T seems to think that’s fine. We are really hoping to start the third round on Wednesday, mostly so we can squeeze in our trip to Camp Okizu for Memorial Day weekend!

Stacey also reported that Ivy’s counts look good: hemoglobin-8.8, platelets-43K, WBC-6.1 and an ANC of 4636! No more GCSF at home!

We are loving being home, but it feels like a vacation, so it’s hard to think in terms of organizing, cleaning and packing for our move, which is several months behind schedule…

Many thanks to Iris and her van for getting us and all of our belongings home on Tuesday, and many thanks to all of you for the wonderful messages in the guestbook.

Fingers crossed that Ivy stops coughing by Wednesday!

Love Allyson, Pete, Jasper and Ivy

Monday, April 23, 2007 12:12 PM PDT

We got some shocking news about an hour ago…we’re going home TOMORROW!!! All of a sudden Ivy has an ANC of 200-something, which they expect to keep climbing. Last cycle I do remember that once her ANC appeared it increased rapidly day by day. They want her to continue the GCSF (white cell stimulator) at home, as well as the TPN (which they are knocking down to 12 hours).

Ivy got platelets and blood yesterday and I’m not sure how much of a bump she got, but I guess it was enough that they feel confident about sending her home.

On Friday Ivy is scheduled to have a CT scan to evaluate progress and to help decide if she needs more chemo. I think even if the scan shows she is completely fine she should get at least one more round. We really need to knock out the last of the deranged Langerhans cells, wherever they may be hiding.

Still in shock here…pinching myself…Of course, it’s not written in stone that we’ll be out of here tomorrow—things can change at any moment…but still…

Love Allyson, Pete, Jasper and Ivy

Saturday, April 21, 2007 1:03 PM PDT

I’m just updating because I’m bored…still no immune system in sight, which is very discouraging. Dr. R said it’s possible the third cycle could be delayed so we can get a day or two at home, but I’m not so sure that’s a good idea. We’ll see…we have eleven days until the next cycle is supposed to begin.

Pete’s at work today (on Saturday!), so the kids and I are just hangin’ out in 5309. The nurse pointed out that both kids seem content to be at the hospital; it’s just the grown-ups who complain. It’s true.

Ivy’s platelets are still quite low (12,000, I think), despite the transfusion yesterday, but they are holding off on giving her more unless she starts bleeding somewhere. Her hemoglobin has been dropping slowly over the last several days and today it’s at 7.1, but they don’t want to give her blood either. I guess it’s because she is energetic and not showing any ill effects of anemia. We like days with no transfusions; it means Ivy gets some time off the pole, which cheers all of us up. In fact, Ivy has not needed blood since Monday—that’s pretty remarkable!

Ivy’s cough sounds MUCH better today, so maybe tomorrow we will be out of exile. I shouldn’t get my hopes up though…

Ivy made a special request of Debbie: more cupcakes, please! So we are eagerly awaiting their delivery and a visit from the baker herself…

Always remember the kids whose battle with LCH is FAR more challenging than Ivy’s—pray for them and also for Ivy, that the worst of her fight is behind her. I can barely fathom how sick she was two months ago and also can hardly believe how lucky we are that she is responding so well to treatment. In fact, seeing her now, we wonder how could she NOT beat this disease? She is so vibrant and definitely has much to offer this world.

Enough rambling…and Jasper wants to play a computer game. Thanks for reading.

Love Allyson, Pete, Jasper and Ivy

Friday, April 20, 2007 1:08 PM PDT

Ivy’s getting platelets right now. The nurse showed me the bag with Ivy’s name on it—all good—but then I saw that the platelets were AB negative and I know Ivy is O positive. I know that the negative is not a problem (positive people can take negative blood), but my heart skipped a beat when I saw the AB. But it turns out that when it comes to platelets, blood type doesn’t matter. I was very surprised by this! Ivy’s never had a reaction to blood products anyway (many people need to be premedicated with Tylenol and Benedryl), but the nurse always hangs out for the first 15 minutes, just in case. Anyway, no reaction this time either, despite the ABO mismatch.

Ivy STILL has no white count. She is taking a lot longer to recover this time around and we wonder if that means we will have no time at home before the next cycle. Fingers crossed that this is NOT the case.

This is Day 9 that we’ve been confined to the room and it is getting harder and harder every day. It’s all relative, of course; we are very thankful that Ivy is feeling good and responding well to her chemo.

Sweet/happy moments this week: Ivy singing the ABCs with Mr. Brown, the cleaning guy; Ivy learning how to put on her shoes all by herself; and just now, Ivy asking me to go outside so she could wave to me from the window (Yay! Seven minutes out of the room!).

Just another average update…thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Wednesday, April 18, 2007 11:21 AM PDT

Still hanging in there…Ivy continues to cough, but no more fevers (huge relief!). Besides albuterol and Pulmicort, they have her on IV steroids for five days—doing everything possible to make her cough disappear so we can get off house arrest! Still no white count either, which is frustrating, because 1) that might make her cough go away faster, and 2) the sooner her ANC comes back, the sooner we go home before the next cycle. But Ivy is hanging on to her hemoglobin and her platelets climbed just a wee bit on their own, so SOME things are moving in the right direction. She has petechiae, which look uncannily like her LCH rash, but with her low platelets and good response to chemo, we are assuming they really are petechiae. She also had a terrible diaper rash over the weekend, but it was not the evil LCH rash, nor was it the dreaded mucositis that comes with this chemo. We got it under control with an Aveeno bath and Nystatin, just what we would have done at home.

They’ve upped her TPN, because Ivy is eating very little. Most kids here are on TPN.

Looks like it will be a quiet Wednesday here, but I am looking forward to the knitting lady coming, so I can start my next project, which I’m hoping will amount to more than just a rectangle.

It’s been windy here, so our view is just astounding today—very clear and bright. I call it the three-bridge view (Bay Bridge, Golden Gate, and San Rafael).

Thanks for all the lovely messages in the guestbook and for coming to visit—makes it that much more bearable here…All for now…

Love Allyson, Pete, Jasper and Ivy

Monday, April 16, 2007 10:46 AM PDT

Ack, Ivy’s had a couple of fevers, which is worrisome. She had one in the wee hours of Sunday, so they did another xray yesterday, which to our great relief, showed much improvement since last week. But then she had another fever last night. Dr. T had advised us that sometimes when the white count is coming back up (but before one is aware that it is), the white cells go attack the infection, causing fevers and worsening of symptoms temporarily. I am so glad he warned me about that, because instead of the low-level anxiety I am feeling, it would be full-blown panic. It was this time in her last cycle that her white count started recovering, so fingers crossed that it is this time too.

Ivy will be getting red blood cells and platelets today, all par for the course.

Her energy is great; she’s still happy and playful, but confined to her room. She slowly starts inching out into the hallway, before we reign her in. She gets several hours a day “off the pole” (not connected to anything via Broviac), so she really is very mobile and would LOVE to be running up and down the hallway with the other kiddos. Ah, well…maybe in a day or two.

We take advantage of all that 5 South has to offer: a mandolin concert last night, the artist-in-residence who brings the art projects right to Ivy’s room, the lady who comes once a week to teach knitting (I have completed my first project—a pink…rectangle. Yup, that’s all it is, but I used up my entire ball of yarn, so it’s done).

It was a subdued weekend here on the ward, because not only did we lose Nathaneal, we lost two other boys in the past four days. I’m not sure if that’s ever happened before, three in one week. Anyway, there’s a somber mood here, and no wonder…all of us wondering if it will be our child next. So hug your babies—you just never know.

Gosh, I started out so positive and ended on a downer…Sorry about that. Thanks for reading—now get out and enjoy that spring weather! Wish we could join you!

Love Allyson, Pete, Jasper and Ivy

Friday, April 13, 2007 12:27 PM PDT

We are relieved that Ivy’s RSV and flu tests came back negative. Still no fevers either. So really, she’s doing pretty good for right now, even though we are still confined to the room because of cough.

Ivy had her transfusion yesterday, but her hemoglobin barely budged, so she’s getting another one today. Dr.R said he doesn’t know why that happened, but that he’s not worried about it. She will also be getting platelets momentarily.

We lost our friend Nathaneal yesterday. We are heartbroken for his parents. Jasper is asking about his friend, wanting to play with him, and I don’t know what to tell him. I did say that he may not see Nathaneal again, may never play with him again, but he will always be his friend. I don’t want to tell him that he died, because I don’t want him to worry about Ivy. It is really hard to grasp that two weeks ago Nathaneal and Jasper were giggling like fiends and now he’s gone.

For now, we are just grateful that Ivy is doing as well as she is, even though we are going stir-crazy in this room.

Thanks for checking in on our girl…

Love Allyson, Pete, Jasper and Ivy

Thursday, April 12, 2007 12:52 PM PDT

Ivy has “possible pneumonia,” according to the xray she took yesterday. She has a little cough and no immune system, so they did the xray and today are also doing a test for RSV and flu (though we are at the tail end of the season for those). She has no fever and is still pretty active, which are very good signs, so we are trying not to worry too much. They have her on two different antibiotics to combat potential pneumonia. With the cough, she is confined to her room and that’s a real bummer, but it’s still better than being in an isolation room—at least Jasper can come and go from the playroom and I have easy access to the kitchen.

Ivy will be getting a transfusion today, the first since Friday. Her platelets are low enough that she had a little nosebleed when the resident was getting the nasal sample for the RSV and flu tests, but no platelet transfusion has been ordered yet.

We are feeling a lot of sadness this week, with concern about Ivy, worrying about Nathaneal in the ICU, and now I just found out that another of our LCH family lost his battle this week. Little Zachary was just three and in some ways, had a similar fight as Ivy. You can offer your support to his family at www.caringbridge.org/visit/zacharyhunter. And of course we are on a ward of very sick little kids—it seems most are under five years old and it is just so wrong that they have to fight so hard.

I will update when I get the results of the RSV and flu tests. Thank you for checking in.

Love Allyson, Pete, Jasper and Ivy

Tuesday, April 10, 2007 1:56 PM PDT

Ivy’s chemo finished last night and so far, she’s feeling fine, other than two episodes of emesis yesterday. Her counts have begun to drop, as expected. We will be here until they recover, at least two more weeks. Ivy will have another CT scan around that time, to measure progress. Then the third round of chemo is scheduled to begin May 2.

Our Easter was very nice, even the weather. The Easter Bunny found us here at CHO and left baskets for Ivy and Jasper (the hospital also provided TWO baskets per child, including siblings). Pete and I took turns going out to Sara and David’s new house for the Easter gathering there. Ivy participated in an egg hunt here on 5 South. The kids were so enamored of the hunt that they held their own last night and again this morning, running up and down the hall “hiding” eggs, then moments later, retracing their steps and “finding” them. There have been many siblings spending long hours here because of spring break (this week and last).

Then Becky brought us a delicious gourmet Easter dinner—I am enjoying the leftovers right now. All in all, a lovely day.

Our friend Nathaneal has been sent down to the ICU and we are very worried about him. He is his mother’s only child…please keep him in your prayers and thoughts.

Thank you for reading…it’s all going pretty smoothly this time around, thank goodness.

Love Allyson, Pete, Jasper and Ivy

Saturday, April 7, 2007 12:40 PM PDT

We are happily ensconced in 5 South! They moved us last night around 11. We had befriended our 14-year-old roommate and miss her some, but nothing beats having your own room!

Ivy seems to be feeling fine, even halfway through her chemo. Her ANC remains high, but we expect it to start dropping any day now. Her platelets have already dipped a bit.

We also found out that one of Ivy's doctors sent her kids to the same preschool that Jasper is lucky enough to attend. Agreement all around that it's a wonderful school!

That's all the news from here...have a wonderful Easter, everyone. Looks like ours will be rainy, but that doesn't matter so much when you're stuck inside, does it?

love Allyson, Pete, Jasper and Ivy

Friday, April 6, 2007 2:24 PM PDT

We're on our third roommate in two days, and that's as exciting as things get around here. Oh yeah, and someone came by to drop off Easter baskets, but they aren't allowed to hand out candy to patients, so the baskets are barren of that. Too bad...

Ivy was happy to arrive here on Wednesday, to the point of exuberance. She was thrilled to see all her nurse buddies and we were all delighted that Ivy's very fave was assigned to her. We are missing our pals on 5 South, but we see their parents every once in awhile for quick chats. We are hoping to get over there SOON!

The fevers have started again, to be expected with Ara-C. Once her ANC drops they will start the antibiotics and antifungal meds. Ivy will be getting a transfusion this afternoon--her hemoglobin is at 8. And onward we trudge...

Oh yeah, forgot to mention last week that Jasper is only a half match for Ivy, should she ever require a bone marrow transplant. Not good news, but we're hoping this chemo does the trick and we don't even have to consider BMT. Blech.

Our neighbors are bringing us dinner tonight--yay! Thanks for reading this altogether boring update!

love Allyson, Pete, Jasper and Ivy

Wednesday, April 4, 2007 1:06 PM PDT

The good news is that Ivy’s counts are great: both platelets and white counts are in the normal range and her hemoglobin is 9-point- something, which means that she held on to her transfusion from Friday. These labs are from Monday morning, so chances are her hemoglobin is a tad lower by now. What this means is that Ivy is ready for her next round!

The bad news is that there are no beds on 5 South, so we will be stuck on 5 East for a couple days, until Ivy is immunocompromised again. This means a shared room, which makes hospital life almost unbearable. Ivy also seems to have a little cold, which means they wouldn’t let her on 5 South anyway, but it does not prevent her from starting chemo. She caught the cold from her brother and for him it lasted only a day and a half, so we have high hopes it will be the same for Ivy.

So now we await the call from the charge nurse saying there’s a bed available.

Our days at home were wonderful! Here’s how we filled them: three different merry-go-round rides in three different cities, the zoo, a birthday party, a date for me and Pete, a long-overdue haircut for me (seven inches!), shopping for much-needed clothes for Jasper, lots of time spent outdoors in perfect weather, and very little in terms of productivity. Ah well. One can only do so much.

I am also seeing what it’s like to be out and about with a bald girl. Lots of stares, that’s for sure. I mind only a little bit. And actually Ivy has some hair—it’s just very sparse and her scalp glows white!

Ivy has been in great spirits and had lots of energy the entire time. She’s happy to be home, but also keeps asking when we can go back to the hospital to see her friends. Soon enough, little girl! She has also left her Daddy phase behind and is now in the throes of a Mama phase.

More updates to come after chemo is started…Thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Friday, March 30, 2007 2:34 PM PDT

Spring has sprung and so are we! Ivy gets to go home today; we are just waiting for a transfusion (the first in at least five days!). A transfusion takes 3.5 hours and we haven't even started yet, so obviously, it will be nighttime by the time we finally get there, but so what?!

Ivy has been allowed to leave 5 South today, so we moseyed on out the back door to the playground and garden with our friend Jessica. You wouldn't know that Ivy's hemoglobin is only at 7.4 from her energy and excitement. I can't capture in words how absolutely adorable she was marching to the doors leading out of the ward--funny and precious!

Ivy's platelets are as high as they've been in over six weeks--up to 91,000.

Of course, we'll be back here next Wednesday to start the second round of chemo. We have been trying to prepare Ivy for returning and it seems to be working. Every time I say, "We're going home!" she says, "But we come back!" And now that she has befriended so many nurses and kids it won't be so difficult coming back in (at least that's what we hope.)

We will be doing 12 hours per day of TPN at home and drawing labs on Monday to make sure Ivy's ready for more chemo, but other than that, we will be relaxing and having fun.

Ivy's requesting a walk to the playroom so I must sign off. We've had some great meals this week, so thanks to all the meal providers!

love Allyson, Pete, Jasper and Ivy

Tuesday, March 27, 2007 3:34 PM PDT

We have an ANC! (That's absolute neutrophil count--a measure of ability to fight bacterial infection--very important!) It's only 350 or so, but if Ivy can get to and stay at 500 for a couple days, we will be paroled! Then of course we come back next Wednesday, but even a few days at home sounds heavenly! Also, Ivy will be on TPN--she's now on for 16 hours, but they will get her down to 12 before releasing us.

One by one, they are cutting off the antibiotics also. So she will be at home with just the weekend Bactrim (assuming we are home over the weekend).

Ivy hasn't required any transfusions either; this is day 3 without, I think.

Everything is moving in the right direction, thank goodness.

We are tolerating our days here...I am getting proficient at sudoku...Jasper is excelling on the xbox, and has befriended Nathaneal, another five-year-old. You should hear their shrieks and giggles. It seems our visitors are tapering off, so hey, come on down! We are desperate for company!

All for now...

love Allyson, Pete, Jasper and Ivy

Monday, March 26, 2007 12:19 AM CDT

This update is tardy, because it was four days ago, on Thursday, that Ivy WALKED! She walked all the way across her room, out the door, down the hall, around the corner, past the nurses' station, to the double-doors that lead out of the immunocompromised unit, and then paused for five or so minutes so that her parents could chat with another family. Each day since then Ivy's walked some. We knew this day would come and we are overjoyed that it has!

Her fevers have stayed away, which is a big relief. She still gets blood and platelet transfusions, every other day or so. She's eating a little bit more and still in a very good mood. The nurses who have been with us for the entire six weeks are marveling at Ivy's happy smile and good nature. She is so different than she was three weeks ago!

Another nice development is that Ivy is off all oral meds, except for her weekend Bactrim. No more diuretic, no more Ursodial, since she's not yellow anymore. So that makes life easier for all of us.

Ivy's white count has ranged between .2 and .6 for over a week now (today it's at .5, normal is 5.0-14.0). I have no idea if we will be able to go home for a few days before the next round of chemo, which is scheduled for next Wednesday. (Though I have to say, I dread the idea of packing up this room, only to return two or three days later.)

Again, we have so many people for which we are grateful--the parents at Jasper's school have organized dinners for us, so every Monday and Thursday, whoever picks up Jasper will also be picking up a lovely homemade meal to deliver to us! Jasper also had a fun Saturday at the Monterey Bay Aquarium, thanks to another parent of one of his school friends. We are so lucky!

Thank you for checking in...when Ivy's good, we're all good!

love Allyson, Pete, Jasper and Ivy

Thursday, March 22, 2007 4:09 PM CDT

Good news from the scan! Of course, we already knew Ivy's liver and spleen were smaller, which the scan confirmed. Also most of her lymph nodes are a bit smaller. And, lastly, no sign of infection! The fevers have stayed away for 2 1/2 days now, so I guess that means there could have been some type of infection that one of the multitudes of antibiotics or antifungals took care of.

The docs were grinning ear-to-ear when telling me the results of the scan (unofficially last night, officially today). The nurses are thrilled too. Everybody's rooting for Ivy!

They had a hard time sedating her for the scan; evidently this can happen while on chemo. Ivy was really cute though--very relaxed by the fentanyl, but super chatty. She woke up almost immediately after the scan and stayed in a good mood.

She received both platelets and red blood cells yesterday, but so far, so good today. She remains in a great mood, calling Nurse Anne, "my friend."

It's quiet here on 5 South; all of the fun 2- and 3-year-olds have gone home (though we know one will be back next week).

Thank you for checking in!

love Allyson, Pete, Jasper and Ivy

Tuesday, March 20, 2007 11:58 PM CDT

I was back at the hospital today, not 100%, but not sneezing either. Ivy had a GREAT day! She was chipper all day, even after skipping a nap (which is not so unusual in the hospital). She seems to be feeling good and even walked a couple steps to retrieve her doll’s shoe (thanks, Edie!).

Her hair is definitely falling out though—there are clumps on her hospital gown and on her pillow. I keep talking to her about it, telling her it will be gone, that she will be like Justine and Harrison, two of the bald kids on 5 South. She doesn’t seem to mind. I clipped a lock of her hair today, as a keepsake. She’s never had a haircut, so I’ve never been able to collect one before. Bittersweet for most moms, I’m sure, but when you know your two-year-old will be losing ALL her hair due to chemo, well, there’s nothing sweet about it.

Dr. F, this week’s attending, said that he can measure her progress by the fact that Ivy lets him feel her belly now. She doesn’t writhe in pain and push his hand away. That’s really a big deal for her. It only took us five long weeks to get here!

She will be having a CT scan tomorrow, for two reasons. One, obviously, is to compare to her most recent one and see what kind of effect the first round of chemo had. The other, which I did not know until today, is that they are looking for an infection somewhere. Ivy keeps having fevers, so there is some concern about an infection, like a fungus. I have to say, this terrifies me. I KNOW that kids die of fungal infections while on chemo. She’s already on an antifungal med, but the dose is teeny. If they find an infection, they will increase the dose by a lot to fight it.

BUT, she has not had a fever since midnight last night, so almost 24 hours ago, AND her mood is not indicative of a worsening infection! And of course, her white count continues to climb. So…I guess we’ll know soon enough.

I am able to type out this update by letting Jasper stay up to watch Flushed Away, but that poor kid really needs to get to bed. We had a long day at the hospital today and will have another tomorrow.

Thanks again to all our visitors, package-senders, Jasper-picker-uppers, and food-bringers. We also must send out a special acknowledgement to our big-hearted friend Lauren, whom we know from CHO (a brave leukemia fighter, that one). She, for her seventh birthday asked her party guests, in lieu of gifts for herself, to donate to the HAA in honor of Ivy. This is not the first time a little girl has done this for us, but I am blown away by the generosity and selflessness. Thank you, Lauren, and happy birthday! We are honored to know you.

Good night all and thanks for reading…

Love Allyson, Pete, Jasper and Ivy

Monday, March 19, 2007 1:34 PM CDT

I have never been so annoyed and frustrated at having a cold! I am now barred from the hospital and I miss my girl! It’s a very minor cold, just a little bit of a scratchy throat and some sneezing, so I’m hoping it passes quickly. According to Dr. T, cold viruses are not super dangerous for the immunocompromised, so I don’t have to worry too much that I already subjected Ivy to some deadly infection. In fact, it’s Ivy own gastrointestinal bacteria that is most risky for her right now. A normal immune system keeps all that in check, but with no immune system, those pesky bacteria can take over.

And actually, Ivy’s white cells are creeping back up again. For several days she was at <.1, which means they can’t see ANY on the slide, but she’s now up to .3. So that’s good news—maybe she will get to come home for a few days before the next round!

Ivy continues to need blood and platelet transfusions almost every day. We’ve been doing this for so long now, that it hardly seems newsworthy. She is also still having fevers. It’s slightly possible she has an infection at her Broviac site, so they started her on super-powerful Vancomycin, which targets skin infections. We are hoping that it gets under control quickly and doesn’t “tunnel” under her skin, which would be worrisome and would result in having her brand new Broviac removed.

Mood-wise, Ivy has been pretty good. She seems more comfortable than before and during chemo. She talks a lot and goes to the playroom at least once a day. Three times a week the artist-in-residence comes, which is more thrilling for me than for Ivy, I think. I am proud of my little artistic endeavors!

I suppose I must sign off—it’s a rare day home alone and I should be packing or something!

Thank you for checking in.

Love Allyson, Pete, Jasper and Ivy

Friday, March 16, 2007 5:13 PM CDT

Not much to report, which is probably a good thing...Ivy has continued to require blood and platelet transfusions, although yesterday she maintained a hemoglobin level of 8.1 all day long. They finally transfused her around 10 pm.

She had a fever last night, which is bad, but we can't expect one cycle of chemo to clear up all those nasty LCH symptoms. Dr. T seems to think that the chemo will continue to improve Ivy's symptoms even before she gets her next dose. So he wants to have her scanned sometime next week (meaning that he hopes for improvement between now and then, I guess).

Ivy hasn't wanted to visit the playroom today, but she wants her door open so she can see the kids run by. She's also been very chatty, talking about her Broviac, the Wizard of Oz and her cat Jack, among other things.

We received our confirmation for Camp Okizu for Memorial Day weekend, but I don't know how likely it is that we can go. Maybe if Ivy is miraculously cured after only two cycles, or if she is between cycles and her counts are high enough. We probably won't know until the last possible moment and I hope they will hold our space...

All the news from here...it's a beautiful day outside--too bad we are stuck inside!

love Allyson, Pete, Jasper and Ivy

Wednesday, March 14, 2007 11:15 PM CDT

Just a quick update to say that Ivy had a better day...no more bleeding, thank goodness! Also, no more fevers, so we can continue to hope that the most recent fevers were caused by the Ara-C, not raging LCH.

She had two red blood transfusions today--they are trying to keep her hemoglobin in the 8 range so she feels better. Despite a nice bump in platelets from yesterday's two transfusions, they have again dropped, so she got more tonight. This isn't good news, but I suppose we can't expect the symptoms of LCH to disappear after just one cycle.

Liver and spleen remain the same, but that's no surprise.

Ivy had a crying fit when we told her we couldn't leave 5 South. She'll have to get used to that, unfortunately.

Jasper spent a full day with us at the hospital, which was nice. He runs around like he's very comfortable here and we are glad for that. We all spent lots of time in the playroom making art (they have an artist-in-residence here!) and watching Jasper play on the x-box. He's getting pretty good at it!

So we'll just keep on keepin' on...it's not like we have a choice!

love Allyson, Pete, Jasper and Ivy

Tuesday, March 13, 2007 6:23 PM CDT

It has not been a quiet, calm day here. At all. When I arrived this morning Pete told me that Ivy had had two fevers during the night, as well as a bloody nose that wouldn't quit. So she got platelets this morning. And promptly got another bloody nose. She bled on and off for a couple hours, they packed her nose, ordered more platelets and now we wait and see. I haven't asked what happens when her disease eats up her platelets faster than they can be replaced...can she bleed to death?

It was traumatic for Ivy, to say the least, but also for Jasper I think. He ran out of here to the playroom and stayed away for a good hour. Poor little guy. I'm glad the playroom is only two doors down and that there was a Child Life specialist there to entertain him. I like having him here, but I don't want to traumatize him. Siblings of sick kids grow up way too fast.

We had a brief talk with Dr. T this morning, who said Ivy is officially neutropenic. She's also severely anemic, despite her transfusion yesterday. So what's happening is that the chemo is "working," meaning that it is impacting her marrow. She's not making many, if any, new blood cells. The problem is that her disease is still very active and the blood products she's getting are being eaten up faster than they can be replaced. Thus, the endless nosebleed.

It's not good news, but it's not unexpected either. Dr. T then had to run to the OR to do a bone marrow biopsy or some such thing, so he said he'd be back to palpate Ivy's liver and spleen. He returned an hour or so later and gave me the GREAT news that her liver and spleen are SMALLER! They were below her belly button and now they are above it. So, despite her needing multiple transfusions daily (which he said will continue), we have made a little bit of progress. I don't know how much stock to put into this news, but it's the only positive thing going on right now, so we will cling to it with hope.

One of the kids had a party today, to celebrate his first day of remission and the fact that he's going home (I think). He is a big Spiderman fan, right along with our Ivy, so he had a Spiderman cake. Ivy ate a whole piece! That's all she's eaten today though, and the plan is to start her on round-the-clock TPN. She is wasting away. You should see her skinny little legs--she looks a bit like a fashion model with her bony appendages and her wild hairstyle. Actually, she looks like a cancer patient, which she kind of is, even though she doesn't have cancer. Know what I mean?

All for now...I'm looking forward to a home-cooked meal tonight, the first in awhile!

Keep the prayers coming...and never take your clotting ability for granted!

love Allyson, Pete, Jasper and Ivy

Sunday, March 11, 2007 11:59 PM CDT

I know some people start to worry when there's no update for a day or two, so here you go. Ivy is doing as well as can be expected. The chemo continues until tomorrow night--the nurse just hung the last 24-hour bag. Ivy has continued to get morphine every once in awhile. She's had both a red blood transfusion as well as more platelets. Three fevers in the last 24 hours, but none in the days preceding. They say that Ara-C causes fevers in almost everyone. So, from a medical standpoint, there's no news.

Dr. T will be back tomorrow, after a four day absence.

It was a most beautiful and glorious day here today. We took Ivy outside to the play structure, which may be the last time we are able to do that for awhile--she will soon have little ability to fight infection and will be quarantined to 5 South. We also had art time in the playroom, which neither Ivy nor Jasper was the least bit interested in, but I got all excited, because I wanted to make a sign for Ivy's door. I am so not the crafty mom (I leave that to preschool), but I am proud of my creation! I suppose it's not worth photographing, but I like it nonetheless...

That's all the news from 5310...not looking forward to five days in a row here mostly by myself. Ah well, the other moms feel the same way, I'm sure.

Thanks for checking in.

love Allyson, Pete, Jasper and Ivy

PS: Oops, I almost forgot to mention that the Tooth Fairy made her first ever visit to our house last night, because Jasper lost not one, but TWO teeth yesterday! I didn't expect the sight of those little tiny teeth in the palm of his hand to make me tear up, but geez! He got those when he was four months old. No gap though; his adult teeth came in over a month ago!

Friday, March 9, 2007 6:56 PM CST

Just another thrilling day here on 5 South...in terms of Ivy, nothing exceptional. There was a birthday party in the playroom for Aliyah, turning three soon. Ivy didn't want to go to the party; she watched them set up and then later, when I told her the party was over, she wanted to go to the playroom to see. I took Jasper to the party--he was most interested in the x-box that some of the bigger kids were playing with. He is now obsessed with computer games. Sigh.

Ivy seems to be the only patient on this side who has much hair left (to clarify, she has one big dreadlock on the back of her head). It's sad to see, and I'm trying to prepare both Ivy and Jasper for when Ivy's hair falls out. I'm not sure how soon that will happen, but it will definitely happen. Despite her almost two years on chemo already, she was never bald. A little thin maybe, but not bald.

We think the chemo is causing Ivy pain, so she gets morphine whenever we think she needs it--so far only once today.

More fun mail arrived yesterday--thank you, we love that!

Ivy and Jasper want to go to the playroom, so I must sign off...

love Allyson, Pete, Jasper and Ivy

Thursday, March 8, 2007 5:22 PM CST

Not too much going on today...Ivy started chemo last night, on time, more or less. It went off without a hitch. She had some pain from her Broviac surgery so she got a little morphine last night and again this morning.

The surgeon who did it complimented us on keeping Ivy's old line in good shape for two years. She said Ivy had long outgrown it. This morning's blood draw went very smoothly with the new Broviac, so that's one bit of good news and a relief.

Ivy's hemoglobin was as low as it's ever been (5.8), so she started off the day with a transfusion (is this her eighth? I'm losing count). Her platelets were as high as they've been in the last three weeks, up to 42,000, but that is because she had two transfusions yesterday--one in the middle of the night, one during surgery.

In about a week Ivy will probably start feeling really yucky, with mouth sores and the other stuff that goes along with chemo. She has to have steroid eye drops every four hours because the Ara-C can hurt the eyes and I'm sure you can imagine how well that goes over.

So we are trying to get into the rhythm of hospital life...so far, mostly okay.

Some of our histio friends are having a hard time right along with Ivy; Patrick is relapsing as well, into a new system where he previously did not have involvement (such a sneaky disease!). And Lindsay Kate, Ivy's age, similar initial involvement, has been told to hang on to her port because her LCH is flaring a bit. Please keep all these brave kids in your prayers.

Thank you for checking in on our Ivy. She's hanging in there.

love Allyson, Pete, Jasper and Ivy

Wednesday, March 7, 2007 11:33 AM CST

Because Jasper is still sleeping (it’s 9 am; yay, Jasper!), I will take a little time to update…Our meeting with Dr. T was good—long and informative. At this very moment Ivy and Pete are heading down to the OR so that Ivy can have her single-lumen Broviac replaced by a double-lumen. Unfortunately, this means she will have a matching scar on the other side of her chest, but maybe this new Broviac will function better than the old one (I’m getting tired of blood draws that take an hour).

The reason Ivy needs the double-lumen is that 2-CdA is not compatible with other drugs, so it needs its own little tube. Sometime today Ivy will start high-dose Ara-C and 2-CdA. She was on 2-CdA in the summer of 2005 and it didn’t help her at all, but this will be twice the dose; in combination with the Ara-C, it should work better. This protocol is also known as the French study. We will do 2-6 cycles, with each cycle being about four weeks. We may get a few days to go home in between if Ivy’s immune system can get strong enough between cycles. In fact, that’s why the hospitalization is so long; Ivy will be at serious risk of infection, so they want to monitor her very, very closely. It would be tragic if she survived her LCH, but instead succumbed to some little bacteria.

Dr. T had good reasons for not doing the Japanese protocol and he came to his decision independently of Dr. McClain (histio guru in Texas who was nice enough to speak to me a few weeks ago), so it is a relief that two great minds came to the same conclusion regarding treatment for Ivy.

Regarding Ivy’s liver, the opinion is that an enlarged lymph node is blocking a bile duct, thus the high bilirubin (so it’s not LCH causing that, though she does have LCH in her liver). And her spleen is enormous, but when I asked Dr. T if it’s the biggest one he’s ever seen, he said no. So that’s something.

Ivy also has a new, much nicer room on 5 South, the Immunocompromised Unit. We moved her and our eight wagonloads of stuff last night. We will be giving up our view of the helicopter landing pad, which provided some excitement a couple times a day, but instead will have a bay view and nice sunsets. Also, we can now wave to our friends and family as they come and go from the hospital. These are the little things we appreciate…

We also greatly appreciate how much support we are getting from all of you…the list of names would be long (and you know who you are!) and I worry that I might accidently omit someone, but if you have taken care of Jasper, brought food, toys or treats, sent fun mail, offered prayers, etc, etc, etc, then we thank you from the bottom of our hearts!!! You have done so much for us. After saying thank you so many times it begins to sound meaningless, but it’s all I have. So thank you, friends. Thank you, family.

It’s now 9:30 and Jasper is STILL sleeping, but I must wake him so I can relieve Pete so he can get to work.

Love Allyson, Pete, Jasper and Ivy

Tuesday, March 6, 2007 12:19 AM CST

We asked for some changes this week, and changes we got. Yesterday morning Ivy had a CT scan and what was determined was that she's been getting worse, not better. Her spleen is twice the size it was and her lymph nodes are either unchanged or slightly bigger. They were also looking at her liver, because she is still having higher than normal bilirubin. They were looking for some kind of blockage, which they did not find. So I think the consensus is that LCH is the cause of her high bilirubin. They didn't mention her lungs, so I guess that means they are unchanged or not a cause of concern.

What this means is that Ivy will be starting chemo this week, maybe tomorrow. Dr. T, with whom I had a short chat in front of the elevator, is still trying to decide between the salvage arm of the Japanese protocol and the Histiocyte Society's high-dose Ara-C and 2-CdA. Either way, it will be brutal and Dr. T said to plan to be in the hospital for awhile.

We will be having a real meeting with him later today. He also said he will be moving Ivy to the "Aqua Team," which he is on. I don't really understand how they do things here, but until today, Ivy has been on the Red Team, which made communication with Dr. T difficult, to say the least.

Today Jasper and I are going to the lab to have blood drawn for HLA antigen testing, in the event that Ivy needs a bone marrow transplant (please, no!). Pete will go later in the week, but since he just started a new job yesterday, he needs to put in some time there.

Other than this earth-shattering news, Ivy had a good day yesterday. Her blood counts were stable (though I understand today her platelets are down quite low), her bilirubin had gone down, and she was in a good mood all day (probably due to the fentanyl from her CT scan and later, her prednisone). Beth and I stayed at the hospital last night until 10:30, despite a very tired Emma and Jasper, because Ivy was being so darn cute and chatty. We cherish those times...

I will update after our discussion with Dr. T this afternoon. We need lots and lots of prayers, positive thoughts and good vibes right now. Thank you.

love Allyson, Pete, Jasper and Ivy

Sunday, March 4, 2007 2:19 PM CST

Let's talk about Jasper. Pete and I are so proud of him and how he is handling this whole ordeal. He comes here every day, walks in happy and good-natured, no matter how unkind Ivy is to him (and she has not been Miss Merry Sunshine!). He puts up with her abuse and always lets her have her way. At the end of the day it's a little harder for him, because he is so tired, but he gives in without a tantrum. He is constantly sleep-deprived because he goes to bed late, gets up early, and most days doesn't get a nap. He gets very little down time and is instead shuffled from school to playdate to hospital to bed. He is so mature and he's barely even five years old. Jasper's learned a lot of patience and compassion in the past few weeks and his parents are mightily impressed. Ivy is lucky to have such a wonderful big brother!

And on to Ivy...yesterday was one of her best days. She laughed, went outside three times, and ate a decent amount (for her). She had another transfusion, but wasn't acting like she even needed it. We all had a good day. I took Jasper to a birthday party...the weather was beautiful...we had so many visitors that it felt like a party in Room 5322.

Unfortunately, at bedtime, she went downhill. She had a high fever and seemed to be in a lot of pain. Then we had a disastrous blood draw this morning that took over an hour and the nurse wasn't even able to fill all the vials she needed to. Ivy also threw up her cyclosporine TWICE this morning. Needless to say, both Ivy and I are exhausted, but Ivy is getting in a little nap, which she desperately needs.

We haven't spoken to the doctor yet today, but yesterday Dr. T paid a short visit. Unfortunately, I was at the birthday party and missed it (kicking self) but according to Pete and Jenifer, he didn't offer too much new information. He said we will do a repeat CT scan sometime this week, that the liver is still enlarged, but this could be from the prednisone and the CT should help us figure it out. He said something vague about going home soon, but it is a complete mystery to all of us how Ivy could possibly be at home any time in the near future.

One little piece of doctorly wisdom he imparted was that we shouldn't make Ivy walk (we haven't in over a week), because unlike adults, kids don't like lying around all day and as soon as they are able, they will be running and jumping like normal. He says this is a good indicator of when a child is getting better, when they start walking again. We anxiously await that day.

I do think Ivy plateaued over a week ago and now we are just treading water. I hope this week sees some significant changes, either in Ivy's response to treatment, or a whole new treatment plan.

Thank you for checking in...
love Allyson, Pete, Jasper and Ivy

Oops, tiny little update: Dr. M was just here; no real news, other than the look of concern all over her face. We are waiting for labs, then we'll know if Ivy's better or worse--my money is on worse. We are also changing the broad-spectrum antibiotic. I don't think that will help or hurt.

Friday, March 2, 2007 2:48 PM CST

Our pediatrician came to see us this morning, bright and early. So now I can add another doc to the list of those who have seen me in my pajamas. But it was nice of him.

Ivy's liver numbers are still moving in the right direction, so we will continue to hold the TPN. Her hemoglobin and platelets are relatively stable, but we won't be surprised if she needs a transfusion over the weekend.

We met Dr. Fridge yesterday and liked her, though I'm not sure we learned very much, except that the gallstone medicine, Ursodial, comes from bears! Thus, the name. We already knew that heparin comes from cow intestines, so I guess we have a lot to thank the animal kingdom for.

Dr. Fridge did mention that if the TPN is not working for Ivy, she may have to have an NG tube--that is, a tube that goes up her nose and into her stomach, carrying formula. Somehow, I don't see a two-year-old cooperating with that...

So for now our plan is to hang tight over the weekend, hope Ivy keeps eating (she did pretty well yesterday!), and hope for release sometime next week. Of course, Ivy is still very sick with LCH, but in managing all her other issues, that has fallen to the back burner. That's weird, isn't it?

Also, we took her outside yesterday for a short time and that seemed to perk her up, so we will try to do that every day.

Thanks for checking in on our little fighter...she is so brave.

love Allyson, Pete, Jasper and Ivy

Thursday, March 1, 2007 12:41 AM CST

It's a slightly better day so far...it turns out they were concerned with Ivy's increasing bilirubin, BUN, and creatinine, so they stopped the TPN yesterday, gave her a med that breaks up gallstones (which she doesn't have--but they just want to keep things flowing through), and Ivy will have a consult with a GI doc, who has the perfect name of Dr. Fridge.

Ivy ate a nutritious dinner of broccoli, blueberries, yogurt, and cheesy polenta, thanks to Beth and Debbie. We insisted they give her Zofran so she'd keep it all down, and keep it down she did.

So today her bilirubin, BUN and creatinine are down slightly and Dr. M seemed very pleased by this. Ivy is less yellow than she was yesterday. Dr. M said we will cut back on the diuretic also.

Since our short-term goal is to get home, they are trying to wean Ivy off of IV meds and make her take them orally. She hates this, but she has always been SOOOO good about taking her meds, that we know she can do it.

Jasper's teachers told me they have always had a soft spot for Ivy and they are pulling for her. They are so kind that they offered to take Jasper even on his off days, free of charge. I asked how much notice they need and they said absolutely none. He can show up whenever. It's so great to have people like this, who really care about our family.

Let me just brag about Ivy a little bit: she knows many of her letters! She has Superman bandaids and correctly identified the S. She recognized the W on her Get Well Soon balloon. She also correctly reads letters on various signs here on 5 East. We are proud of this girl!

So anyway, on we forge, taking it one hour at a time...It's a roller coaster, for sure.

Thanks for all your wonderful support.

love Allyson, Pete, Jasper and Ivy

Wednesday, February 28, 2007 1:46 PM CST

Now Ivy is yellow, exceptionally yellow. Her bilirubin is creeping up, up, up. As I understand it, this is a byproduct of her red blood cells being eaten up. They haven't told us to put her in the sun, like they did when Jasper and Ivy were yellow as newborns. Not sure why...They don't seem particularly concerned about it, but the docs here have mastered the art of calmness.

Ivy got more blood (#6) and platelets (#2) during the night. No more fevers or emesis (the nice word for puking) though, so that's good. Still very, very droopy. And inflated with fluid.

Her BUN and creatinine are up also--this means she is a little bit dehydrated. It could be from the TPN or from the cyclosporine, but they can test the cyclosporine levels and they are actually a little bit low. They will increase her dose. They will also change up the recipe for the TPN--glucose has been up a bit.

Ivy's case is a challenging management project. I said this to Dr. M this morning, that it seems we are constantly managing symptoms, but that Ivy remains very sick. She agreed, but counselled patience, that we need to give the treatment time to work. I also told her that we don't know when we need to worry and asked if they would let us know. She said, "Well, her setback yesterday was concerning." So there ya go.

I guess the docs are used to talking with moms in their pajamas--it's happened to me twice this week. One just never knows when they'll stop by; will it be 9 or will it be noon?

I'm sure I've left some medical news out, but it's getting harder and harder to track. This is complicated stuff.

Today marks two weeks that we've been here. Yuck.

We are still grateful for visits, food, cards and emails. Thanks for all you've done.

love Allyson, Pete, Jasper and Ivy

Tuesday, February 27, 2007 6:50 PM CST

Two steps forward, one step back. Or maybe it's two steps back. Last night around midnight Ivy threw up multiple times and had a fever, the first time either of those happened in several days. Today she is very lethargic and it feels like we are right back where we were a week ago.

They did an ultrasound of her belly today, to see what's going on in there. They say her liver and spleen look about the same as they did on the CT, but of course you can't be totally accurate when comparing CT to ultrasound. They looked to see if anything was backing up, but it looks like things are flowing as they should be, so that's good. Ivy acted like the ultrasound was very painful for her, poor girl.

They gave her more albumin with lasiks today, to get rid of some of the fluid. She had another fever, of 102.5. Tylenol took care of it, but they now have her on antibiotics again, which is what they do when you have a fever and a Broviac.

We have a new doc now; they cycle through weekly. So now Dr. M needs to get up to speed on Ivy and make decisions for her. So far we've liked and trusted each of the attendings, so hopefully the trend will continue.

Overall, not a great day for Ivy. I don't think we'll be going home on Thursday...

It's another rainy day, but it doesn't matter when you're stuck in the hospital! We even had thunder and lightning, rare for these parts.

Thanks for checking in...let's hope for better news tomorrow.

love Allyson, Pete, Jasper and Ivy

Monday, February 26, 2007 3:35 PM CST

Ivy will be starting her FIFTH blood transfusion within the hour. She just can't seem to keep her hemoglobin up. Her platelets didn't jump as high as expected after the platelet transfusion either. Dr. S said sometimes over the weekend the blood products aren't as fresh and that could be why. Great.

Dr. S seemed more pleased today with Ivy's progress, but I'm not exactly sure why...maybe because there was a tiny increase in albumin (still well below normal though) and maybe because we told her that Ivy's been in a better mood. Oh, and her breathing is good.

They had their meeting this morning and Dr. T wants Ivy to continue with the prednisone for two weeks before they decide whether it's working well enough or not. Dr. S said we may be going home as early as Thursday, but to plan on spending a lot of time in clinic or the day hospital. I wouldn't put any money on us leaving here Thursday, but it's nice to think about. I have to admit that it makes me a little nervous--Ivy's still a very sick girl who won't walk and barely eats. We won't be checking her bloodcounts every morning like they do here, or weighing her diapers. We will just be watching for clinical signs of distress and maybe drawing labs twice a week. When we go home, we will be going with TPN (yuck), a diuretic, prednisone, cyclosporine, and continuing with the Bactrim on the weekends.

That's all the news from Room 5322...I'm off to eat Ivy's chocolate pudding, since she won't eat anything but grilled cheese sandwiches and French fries.

I will close on a positive note: we have welcomed our newest cousin into the world. Asa Theodore was born yesterday to Stefano, Jessica and big brother Nico (two Asas in our family--whoever would have thunk?!). Congratulations, guys!

Until next time,
love Allyson, Pete, Jasper and Ivy

Sunday, February 25, 2007 6:54 PM CST

Ivy is getting a platelet transfusion as we speak. It's her first one ever, so the nurse is not leaving her side until she's convinced Ivy won't have a reaction. They are checking her vitals every half hour or less.

Today, Dr. S's words were that Ivy seems to have "plateaued." I guess this means she would like to see more improvement in terms of blood counts, fluid retention, and swollen belly. Tomorrow morning they have their oncology meeting, so some things will be decided, I'm sure.

Ivy's mood was better today. More smiles, less crying (though she's crying now, I guess, from having her vitals taken).

It's a drizzly Sunday here and it's kind of weird how used to the routine we are. Just another day at the hospital...It's just the three of us here; Jasper's having a fun playdate with Leo!

Thanks for checking in.

love Allyson, Pete, Jasper and Ivy

Saturday, February 24, 2007 6:05 PM CST

Ivy's doing a teensy bit better today. I'm glad I declined the transfusion last night, because her hemoglobin came up on its own, to 9.6. Also, her platelets went up a tiny bit, so we haven't had to transfuse those yet.

The LDH enzyme that can be an indicator of lymphoma was up a little bit yesterday, but back down today, so Dr. S thinks we don't need to track that anymore. Evidently, if it were lymphoma, it wouldn't trend down at all.

Ivy's stool remains blood-free and her skin is clearing up. I guess the prednisone is working! No one seems to know how long it will take for her liver and spleen to respond. Her belly is still huge and it seems painful for her to walk.

Twice today she has asked to go for a walk, which means Daddy carries her for one lap around the 5th floor, then straight back to bed. But even asking to go for a walk is a slight improvement. And she's laughed a few times today. Yay!

I didn't get to take Jasper to swimming; instead Pete and I went to the tile store and very efficiently chose tile for our bathroom. One thing off the list...

I spent the night here last night--uneventful, but I'm tired today.

All for now...thanks for checking in.

love Allyson, Pete, Jasper and Ivy

Friday, February 23, 2007 11:33 PM CST

It's the end of a rough day...nothing terribly out of the ordinary happened, but I think we are really getting burned out being here. Ivy started off in a good mood, but then got really cranky, and wouldn't you know it, it was when Pete was gone for a couple of hours. It may have been the prednisone-induced "'roid rage." Whatever it was, it was no fun.

We are this close to a platelet transfusion. In fact, the nurse came in with a bag of platelets, but I asked to talk to the doc first and we agreed it was not imperative that Ivy have them--her plates were at 26,000; standard for transfusion is less than 20,000. Her stools have been loose, but blood-free for at least a day now. Breathing is better; this may be due to the prednisone. Parts of her rash seem lighter, parts seem redder.

We can't seem to get a consensus on whether Ivy has asthma or LCH in her lungs. Dr. T says asthma, Dr. S says LCH.

The resident just came in to say that Ivy's platelets are still at 26, but her hemoglobin has dropped again. She left it up to me whether Ivy should get a transfusion tonight. I said no, since clinically-speaking, she's okay, but she'll likely get one tomorrow. It never ends.

That's all from here...I'm looking forward to taking Jasper to swimming lessons tomorrow and also to seeing my mom again. But then I think of how Ivy was a week ago when my mom was here, and overall I think there's very little change. One week has gone by and we are still waiting for improvement.

Good night, all (I'm staying in the hospital tonight--we had success two nights ago, so here we go again).

love Allyson, Pete, Jasper and Ivy

PS: Just wanted to add that we've received some lovely cards in the mail from the Dec 01 Mommies--thanks, Val, Shayne and Carol (Ivy snagged the Spiderman stickers before Jasper even saw them--she loves Spiderman!).

Friday, February 23, 2007 12:30 AM CST

There has been a slight improvement in Ivy's mood, even before the first dose of prednisone. Slight is the key word though; she still doesn't want to get out of bed and has long periods of lethargy and crankiness. But there have also been a few smiles, including one for our favorite nurse, Chuck. It made his day, and ours. He's been trying to get a smile from her for a week now. We are a much easier crowd--he's gotten belly laughs from all the rest of us. He's off for the next three days and we'll miss him.

Ivy is otherwise stable. She's on a lot of different meds, including Zofran, because she was throwing up occasionally. It seems to have helped (at $1000 a pop!). She's not eating, so they keep increasing her TPN, which creates a vicious cycle--the more TPN, the less food she'll eat.

That's all the Ivy medical news, I guess. We'll be here through the weekend for sure, then it will depend on when/if the prednisone starts to take effect.

We are deeply touched by all the different offers of help we are receiving. I hate to mention names, for fear of leaving anyone out, but here goes...We are very appreciative of my uncle Chris coming out from Visalia to spend three days working on our new house, my sister Jaan for going to our house after work last night to help clean up, Zealin's family for some more cheery balloons, and so many cards, emails and messages in the guestbook, along with food and visits from lots of different people. Also, Jasper is getting a lot of support at school; yesterday his teacher helped him make a necklace to bring to Ivy. They wrapped it up in pretty paper and Ivy put it on and admired it until bedtime last night.

All for now...thanks for checking in on Ivy.

love Allyson, Pete, Jasper and Ivy

PS: Just wanted to add two things: one, it's not the middle of the night, but actually 11 am Friday. Two, we really do love visitors, so anyone is welcome to come see us. PLEASE!

Wednesday, February 21, 2007 10:31 PM CST

Finally, at the end of the day, Dr. T came to see us. We had already spoken with Dr. S and found out that the skin biopsy came back positive for LCH. We were happy to hear this--it means we can move forward with treatment. There was talk of doing a colonoscopy (we even had a consult with the GI doc) to get a positive biopsy that way, but we are THRILLED that we don't have to do that. That would have meant putting a tube up Ivy's nose to administer a laxative all night long. That would be unpleasant for all of us.

Results from the bone scan and skeletal survey: there are two questionable spots on Ivy's skull. The radiologist is not sure if they are lesions. I'm not sure if we need a definitive there, because the treatment remains the same.

So Dr. T's proposed treatment is this: start prednisone; wait up to two weeks for results; if good results, continue for 12 weeks, then taper for 4-6 weeks. Continue cyclosporine for one year. Ivy's LCH responds to steroids, so we are hopeful it will continue to do so. Dr. T made a comment about "just getting her to 8 years old, then the disease will burn itself out." LCH is different from cancer in that way. It can come back time and time again, but it sounds like if you can keep getting it to respond to treatment, it will most likely burn itself out. We hope we don't have to keep fighting this for six more years, but if we have to we will!

So the Japanese protocol is on hold for now, but it still sounds promising if the prednisone/cyclosporine combo doesn't work. Dr. T also mentioned doing HLA testing (for potential bone marrow transplant), but, no way, no how, do we want to have to go that route. He agrees that we have other options before we consider BMT.

He thinks she has asthma rather than LCH in her lungs. The radiologist says her CT is consistent with that. I don't really get this, as her pulse oxygen is continuously in the upper 90s and every single doctor and nurse who has listened to her says her lungs are clear. But, okay, we'll take asthma any day over LCH.

Ivy had another transfusion today--her fourth in one week. So far no platelet transfusion and no more albumin, though both remain quite low. They have increased her TPN. Hopefully the prednisone will take care of her lack of appetite.

Oh yes, one other thing regarding lymphoma; supposedly, in a person with lymphoma, the prednisone will make levels of a certain enzyme "skyrocket," so that's how we'll know whether or not she has it. I think it's unlikely.

That's enough medical information for now. We spend hours doing nothing, learning nothing, then we have half an hour with a doctor and have to cram tons of new info into our brains. I think we're doing okay in that regard.

In terms of mental/emotional health, well, we're hanging in there. Pete deserves a medal. I am going to try to stay tonight, but already Ivy seems like she won't let him go. We'll see...

And have I mentioned that Pete got a job? He was supposed to start next week, but they are being very understanding and will let him start the following Monday. As usual, my job has been awesome--I can stay away as long as I need to for Ivy. At least we've got that...

Thanks for checking in on our sick little girl. Hopefully by this time next week we'll be home with Ivy on the mend.

love Allyson, Pete, Jasper and Ivy

Wednesday, February 21, 2007 12:29 AM CST

You would think that after Tumor Board they would come rushing to tell us the news, but no. Can you believe we have not seen a doctor since yesterday morning? It was only a stroke of luck that we ran into one of Ivy's nurses from clinic who had been at Tumor Board and gave us a quick synopsis.

Essentially they are happy with the results of the cyclosporine and want to continue with it. Then I think they want a repeat chest/abdomen CT to see if the lymph nodes are shrinking. If so, we can skip the lymph node biopsy. The nurse also mentioned the Japanese protocol, but no indication of when/if that will start. No clue as to how long we'll be in the hospital either.

Ivy has not needed a transfusion since Saturday, but she will be getting one today--her hemoglobin is right at 7. So far no platelet transfusion either--they are very, very low, but stable. Albumin is lower today, but they are happy with her fluid output, so I don't think they will give her more of that.

Yesterday Ivy had a bone scan and skeletal survey, but we don't have the results of either. We are just really hoping that at least her bones can be spared this awful disease.

I think that's all the medical news...Again, we are so appreciative of everything that's been done for us. The Clarks brought us a laptop, so we can check email and update this website any old time we feel like it. Thank you Clarks, and congratulations to Dillon for getting his Broviac out yesterday! Ivy also received a cheery balloon bouquet yesterday from the Sangers, another LCH family. We are so touched by that and also by a visit from a mom at Jasper's school who happens to work here at CHO--she brought up some parking passes so that our every-day-visitors don't have to pay $6 a day. Very thoughtful. We are grateful for so many people bringing treats, to entice Ivy to eat. So far she's not going for much, but we will keep trying.

Pete has slept here every night for a week now, so tonight I will try. Ivy may complain a bit, but hopefully it will work out.

I will update when we hear some news--sooner, rather than later, I hope.

Thanks for all the prayers and well wishes from far and wide. They truly mean a lot to us.

love Allyson, Pete, Jasper and Ivy

PS: The time at the top of this page is wrong--it's not the middle of the night, but instead almost 11 am Wednesday.

Monday, February 19, 2007 10:38 AM CST

UPDATE:
I spoke too soon: the mucousy diarrhea has started and there may be blood in it too. In three hours we've changed four diarrhea diapers. Ivy is also throwing up, mostly bile. Not eating at all today. Also, I should not have said she is having liver failure--most of her liver numbers are good. Some of the enzymes are slightly down and that's okay. We don't want them to be high. So that's good, I guess. Clearly, she's very sick, but Dr. L is happy with her response. Her platelets are stable and her hemoglobin is at 9 (they transfuse at 7; 11 or higher is normal).

I'm going to get lunch (using the computer in the Resource Center right now) and when I get back up to the room, Pete will be taking a well-deserved break from the hospital. He will actually get in the car and drive away. Ivy may not like it, but it's important for Pete's mental state. All for now...

The days are long and tedious, but we are hanging in there. Yesterday Ivy had fewer periods of “good mood,” but the docs insisted we take her out of the room and make her walk a little bit. So Beth and I took her for about 10 laps in the wagon, then Daddy did some tough love and made her walk about 12 steps. Boy, was she mad! That was the end of the good mood, but we had good reason, I guess.

Dr. L was pleased with how things went on Saturday. Well, pleased is probably too strong a word, but he didn’t get more worried. No transfusion yesterday, but since they are only drawing labs once a day, we’ll find out if she needs one today. A platelet transfusion will probably happen today.

What they are most concerned with is her big fat belly and the fact that she’s not producing albumin. The albumin/lasiks combo helped a great deal—more fluid is coming out than going in, but still her liver is not functioning well. I suppose they don’t expect this to change until she starts treatment. And we won’t expect instant results so we may be in the hospital for weeks.

Ivy’s fevers are fewer and don’t spike quite as high, but this is probably because her parents are more on top of it and asking for Tylenol more often.

They started her on TPN (IV nutrition) last night because she’s eating so little. I am really hoping they don’t send her home with it.

As far as the hemolyzing goes (“eating” her red blood cells), they did not find the enzymes that would indicate this. I don’t know if they will pursue anything else or if the assumption is that the general disease process is responsible for this.

The tiniest bit of good news in this overall bleak picture is that there is no blood in her stool. We never expected this kind of relapse—we thought we’d be dealing with diarrhea and diaper rash, not liver failure. LCH is so sneaky. If that’s indeed what we’re dealing with…

Last night I asked Jasper if he misses his daddy and he said, “Yes, and I miss Ivy too.” He sees them both every day, but we all miss our normal life. Jasper and I started talking about Ivy and all the funny things she says. Oh, how we miss that girl!

We are having lots of visitors and we like it that way. Our tiny little private room looks like a gourmet grocery store struck by a tornado—people are bringing us lots of treats! Again, thanks to everyone for all the myriad ways of supporting us. We are so lucky to have you all.

Love Allyson, Pete, Jasper and Ivy

Sunday, February 18, 2007 10:31 AM CST

Ivy is having a hard time. It’s challenging to keep track of all the details, but I guess the big issues are her hemoglobin and platelets continuing to drop drastically, along with her albumin.

She had her third red blood cell transfusion in as many days and this shouldn’t be happening. One transfusion should keep her going for several days. She hasn’t required a platelet transfusion yet, but that seems imminent. Her albumin is very low and sinking. This is something the liver makes, so it shows us that her liver is not functioning properly. And because of the low albumin, she is retaining fluid. They gave her some albumin and then some lasix (diuretic) to relieve her. She peed a lot, but her tummy is huge. She looks very uncomfortable.

So because of all this, the doc in charge of her over the weekend, Dr. L, decided we couldn’t just sit around waiting for Tumor Board and more diagnostics. He started her on cyclosporine yesterday. This is an immuno-suppressive drug commonly used for BMT prep, but also occasionally for LCH. It is not intended to be a cure, but only to calm her system down so that she won’t be needing blood every day and to keep her safe until we start aggressive treatment. I suppose it should help her liver too.

According to Dr. L the cyclosporine won’t alter any cells so that when/if they do a biopsy of her lymph nodes, they will still get a “clean” look. He also believes that everything that is happening to Ivy is consistent with LCH, not so much with lymphoma.

Ivy is also having bouts of tachypnea (rapid breathing) but her pulse oxygen is fine and her lungs sound clear. She has a couple of short periods during the day where she talks and smiles, but mostly she lays with Pete in bed and looks very, very sick. She’s eating and drinking a little bit too.

It’s hard to synthesize 24 hours’ worth of events into a few paragraphs quickly, but I think I’ve covered the gist of what we’re dealing with. We’ve had some terrific nursing care and very kind visitors, the Clarks and the Bishopps, both CHO oncology families, who brought dinner, treats and toys for the kids. Thank you! (Richard and Diane, one the few things Ivy ate yesterday was several bites of the stuffed shells!)

To everyone who has sent information via email, thank you also. I don’t have time to respond personally—the only computer time I get is late at night or early in the morning when I’m home from the hospital, and all I have time to do is update the webpage. But I am processing all the info I’m getting; hopefully I’ll get a chance to pursue it further.

This is the hardest thing we’ve ever gone through. We don’t know how much harder it’s going to get, how much sicker Ivy is going to be, or how long we’ll be in the hospital. Just please keep her in your prayers. No baby should have to suffer like this.

Thanks everyone.

Love Allyson, Pete, Jasper and Ivy

Saturday, February 17, 2007 2:19 AM CST

Too much information…Where to begin?

First off, Ivy spent her day being lethargic and feverish. The Tylenol would help, but then she’d heat right up again.

Near the end of the day Dr. T came to see Ivy and spent at least an hour with us. He had weird information. The bone marrow biopsy came back negative. NEGATIVE! It’s possible it’s a false negative, but for now, we’ll take it. They have not yet done the special LCH stains on the samples, so it’s possible that might change the result. Also, her skin biopsy came back negative for LCH, but again they have not yet done the stains. And we are certain we are seeing LCH lesions on her skin, so that’s a little mysterious. Again, doing the appropriate stains is the only way to know definitively.

Dr. T is also not certain that her lymph node presentation is consistent with LCH—he’s consulting his people on that one. He actually threw the word lymphoma into the conversation, shocking us all. I think we’d rather fight LCH than lymphoma. I don’t think he is seriously considering that diagnosis, but being a smart doc, he won’t discard that theory until he’s certain.

So after all this information that Dr. T threw at us in that hour, I said, “I’m not sure if this is good news or bad news.” His response: “It’s no news.” Plenty of information, but no news.

After he was long gone, the latest lab results came back and Ivy’s hemoglobin was back down to 7.1, from a high of 8.7 after her transfusion. So this also (surprisingly) points to LCH NOT being in the marrow—after a transfusion the hemoglobin should take a lot longer to drop. This suggests that some other part of Ivy’s system is taking the blood cells out of circulation, not that they are NOT being produced. Make sense?

So they did some other blood work, looking for something that might indicate why her blood is being hemolyzed. No results by the time I left at 10 pm. And Ivy is getting another transfusion tonight.

I will say I felt better tonight than last night. We are still dealing with a very sick little girl with certain harsh chemo in her near future, but she was feisty little Ivy tonight, fighting with Jasper, letting me hold her (after days of DaddyDaddyDaddy) and sitting up by herself.

So have I mentioned all the important facts? I think so…It’s now a three-day weekend, so nothing will get done, diagnostically-speaking, except maybe a skeletal survey. No stains, no scans, no biopsies. But Ivy will remain in the hospital because of the fevers and her weird blood activity. That’s fine with us—we have a private room, we can tolerate it.

Dr. T is taking Ivy’s case to Tumor Board on Tuesday. I think one of his main questions will be do we biopsy the lymph nodes or not? Obviously, Ivy won’t be starting any kind of treatment for at least a week.

Your messages, emails and phone calls have been a great source of support for us, as well as the visits and food deliveries. We are especially touched that the Clarks, another CHO oncology family, brought us a bag of Trader Joe’s goodies tonight. Their son Dillon’s story inspires us and it’s so nice to know that they, and all of you, care so much about us and Ivy. Thank you for letting us know!

It’s after midnight—must go to bed. Just remember that our girl Ivy is one tough cookie, a fighter! I’m feeling just a little bit of hope (but I can’t speak for Pete—when he reads this he might think I’m crazy).

Thanks for checking in…
Love Allyson, Pete, Jasper and Ivy

Friday, February 16, 2007 10:39 AM CST

It’s turning out worse than we expected. Ivy’s CT scan shows enlarged spleen, liver and lymph nodes. Also maybe something in her lungs, but they said that could be viral also. Her bone marrow aspirate showed no abnormal cells, but this is a preliminary result; the marrow biopsy, whose results we will get today, will be definitive. There’s really nothing else to explain her low whites, reds and platelets.

So Ivy is relapsing, but new high-risk systems are involved (liver, spleen, marrow). We would not have been shocked at a relapse, but we never expected it to be worse than ever.

As of yet her GI tract does not seem affected, but then, she’s hardly eating. Dr. T (who has not seen Ivy himself, but we keep accosting him in the cafeteria) said that if it hasn’t shown symptoms by now, then it probably won’t. Not sure I agree.

They also took a skin biopsy yesterday, saying it wouldn’t be prudent to start chemotherapy without pathologically-proven LCH. We will likely get the results of that today, but we already know what they are. We are really hoping chemo starts this weekend.

Even though Dr. T hasn’t been seeing Ivy, he has been doing his research and contacting his people. He found a Japanese protocol with very good results—so Ivy will probably be starting this in the next couple of days.

One good test result we got yesterday was Ivy’s brain MRI. There is no thickening of the pituitary stalk and no lesions on her brain. Thank goodness for that at least. Today she will probably have a bone scan and maybe a skeletal survey, then the tests should be done.

Ivy’s been having high fevers, probably due to LCH, and is very listless. The transfusion didn’t help that nearly as much as I’d hoped. Tylenol is a wonder drug though—it brings those fevers right down, Ivy laughs and talks and eats for awhile, then the fever comes back.

It’s been a devastating and horrible couple of days. Please send all the prayers and good thoughts you can muster. We need them now more than ever. And keep Jasper in your thoughts as well. I don’t know how much he understands and we are trying not to worry him, but obviously he can see that Ivy’s not well.

I will update as I can. Thank you for the wonderful messages in the guestbook. They mean a lot!

Love Allyson, Pete, Jasper and Ivy

Thursday, February 15, 2007 9:57 AM CST

Ivy’s in the hospital. At clinic yesterday the docs agreed that she is relapsing and said that being inpatient would expedite her getting all the testing done that she needs. Expedite isn’t the word I would use—as of 9 pm last night all they had gotten done was another blood draw and a chest xray.

The scariest part of this is that Ivy’s hemoglobin is low—6.7 last night. She received a transfusion last night and I’m hoping that when I see her this morning she will be far more lively than she has been for the past five days (we suspected her hemoglobin to be low, but were really hoping that not to be the case).

With it being so low, there is a chance that the LCH has relapsed into her marrow and that is very, very bad. The other possibility is that it’s some kind of virus impacting her marrow—this is best case.

We are hoping that today she gets a CT scan, bone scan, skeletal survey, and brain MRI, along with some kind of bone marrow test. Most of these are the standard staging tests—she had them all before, except for the bone marrow one.

We have not seen Dr. T yet and have no idea what kind of plan he’s got, if any.

I’ve got to get Jasper off to school and then go the hospital to see my girl and relieve Pete. As you might imagine, yesterday was a really sucky Valentine’s Day.

Keep the prayers and good vibes coming. Ivy could really use them right now. Ahhh, my poor girl.

Love Allyson, Pete, Jasper and Ivy

Monday, February 12, 2007 3:41 PM CST

UPDATE:
I finally got to speak with Dr. T this afternoon. It was a frustrating conversation; suffice it to say, Ivy will be seen on Wednesday in clinic, but not by Dr. T--he will be inpatient. Annoying. So we did the only proactive thing we could do today--we drew blood and dropped it off at the lab. Possibly the staff at CHO is trying to set up appointments for CT scan and other tests. They may also be trying to set up an appointment at UCSF with the derm, but I really feel that's unnecessary. We are the experts when it comes to Ivy's LCH and we KNOW this is what we are seeing. We will keep you posted.

I can’t help but wince when I read yesterday’s update: on top of a normal wintertime virus, Ivy’s LCH is relapsing. In less than a day she has many, many spots on her lower belly and her scalp is covered as well. There is no doubt in our mind that we will be treating her for LCH very soon. And we can’t help but wonder if her fever sent her immune system into overdrive…

I called Dr. T this morning and have not heard from him yet. Since we already have an appointment scheduled for Wednesday, he may just wait until then to see her. But I wanted him to have a heads-up that he will be scurrying to find a treatment for her. We are so far beyond the “road map” for LCH that I have no idea what he will suggest.

It was 2/8/05 that Ivy was diagnosed and here we are two years later, still fighting this awful battle.

Prayers, positive thoughts and good vibes, please. Thanks for checking in. I will update when I know more.

Love Allyson, Pete, Jasper and Ivy

Sunday, February 11, 2007 6:04 PM CST

We are having lots of sickness in our house at the moment, but we are happy that it’s just the plain old winter virus type stuff. Jasper was sent home from school with a fever that he couldn’t shake for five days. Then, on Friday I came down with it, and yesterday Ivy.

Unfortunately when Ivy has a fever it means a call to the on-call oncologist who usually tells us to report to CHO for antibiotics. This is because of Ivy’s Broviac—they don’t want to take a chance that an infection is festering there.

But, last night, when I called in, Dr. R told us to stay home! Since Jasper and I had had the exact same symptoms, and Ivy hadn’t had chemo for almost two months (thus, a decently functioning immune system), AND many, many kids in the Bay Area have similar symptoms, he thought it sounded like the same virus. We were delighted and in full agreement.

Ivy will see Dr. T on Wednesday. She has an audiology appointment in April, as well as an evaluation scheduled with the Speech and Language Department, also in April.

I’m hoping after Wednesday that I’ll be able to report a Broviac-removal date (though I must add that Ivy does have some minor skin things going on—I suppose only another LCH parents know what I’m talking about…).

Until next time…
Love Allyson, Pete, Jasper and Ivy

Saturday, January 27, 2007 10:03 PM CST

I didn’t want to leave you all hanging…some of Ivy’s spots went away; one or two linger. We are not so concerned. Other than minor colds, both kids are doing fine!

Jasper is growing up. We registered him for kindergarten on Monday. I can hardly believe that my little guy will be going to “real” school in seven short months!

Ivy is growing up too. We went to a gymnastics birthday party today and Ivy kept up with the big kids, running, jumping on the trampoline, diving into the foam blocks. The other parents were quite amazed by her. I think most of her intrepidness comes from having a big brother who doesn’t baby her in the least, but some of it must be from her health trials and tribulations over most of her life. There’s no stopping her!

We got our Camp Okizu application in the mail and have returned it already. We can't wait. It was such a special weekend last year; this year should be even better.

There are new photos, most of them taken at the San Francisco Zoo a few weeks ago. Ivy says “zew,” which I find utterly adorable.

Thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Friday, January 19, 2007 8:16 PM CST

And how was Ivy’s week? Well, her hearing test came back with essentially the same results as the last two times: there’s fluid and it’s impacting her eardrum and thus, MAY be impacting her hearing—it’s very borderline. I asked if we could have the ear tubes put in at the same time her Broviac is taken out and the audiologist seemed to think that was a distinct possibility. So we’ll exchange one big tube in her chest for two little ones in her ears.

And, unfortunately, we have also noticed some spots on our girl that look suspiciously like LCH. There are just a few that we first noted on Monday. Three docs came in to inspect them on Wednesday and the consensus was that we’ll watch them and if they change drastically they’ll send her over to UCSF for a biopsy (ugh, no!). Of course, if she is relapsing we won’t be taking the Broviac out any time soon. Anyway, it’s too soon to tell; I am anxious, but not freaking out.

Our next appointment is scheduled for Valentine’s Day (yes, that’s right, a full four weeks between visits!). Ivy may be seeing a speech pathologist in the next weeks before that, however. If it’s not one thing, it’s another…

Oh yes, we may be moving in the next couple of weeks too! That’s right, the drywall is up, the floors are about to be done, and the cabinets are ready for installing. But have we packed? No. Ay ay ay!

Have a great weekend, everyone.

Until next time,
Love, Allyson, Pete, Jasper and Ivy

Wednesday, January 10, 2007 2:19 PM CST

Just a short and sweet update to say that, four weeks out from her last chemo, Ivy is doing fine. No signs of LCH anywhere. Of course, we are still holding our breath (will that ever go away?), but for now, we are happy!

Last week she had an odd rash on her hip, spotty and itchy. We’ll take hivey, splotchy, red, and itchy, but when it looks spotty, we get nervous! This rash went away a day later, on its own—probably just itchy winter skin that we are all prone to.

Next week Ivy has her third hearing evaluation and then an appointment with Dr. T. I don’t plan to have anything to update before then!

Love Allyson, Pete, Jasper and Ivy

Thursday, December 28, 2006 5:59 PM CST

The last two weeks have been kind of crazy for us, Christmas aside. We had stomach flu, car trouble and Pete got laid off. I know, can you believe it, a week before Christmas? We’re not happy about it, obviously, but the silver lining is that now he will have seven days a week to work on the new house, instead of just two. We need to get it finished! It’s a long, slow process, but everyone who’s been through it tells me it’s normal for it to look like absolutely nothing has been done for several weeks. But we are really hoping to move in sometime in January.

The stomach flu hit me first, then Pete, then Ivy. Jasper has managed to avoid this go-round. For me and Pete, it lasted 12 hours—for Ivy, it was more like a week. It cleared up a couple days before Christmas, though she surprised us when she threw up on Christmas Eve (AFTER Jasper was asleep, BEFORE Santa came!). She also has a cold that sounds wheezy from time to time, however, when Dr. T listened to her lungs yesterday he said they sounded fine.

We had a great appointment yesterday—despite her ailments, Ivy is doing well, gaining weight, and there’s still no fluid in her ears! Her next hearing test is scheduled for January 16 and her next appointment with Dr. T is on the 17th. Initially he wanted it two weeks out, but then he realized he wouldn’t be in clinic that week, so we pushed it to three, which I think is fine.

Our Christmas was nice; we spent a quick 24 hours with Lodi’s newest residents: my mom and gramma. We crammed three huge, delicious home-cooked meals into that time, plus cookie-baking and decorating. Then we drove straight to Beth and Harvey’s for Christmas Eve. We had our own quiet, little Christmas morning, just the four of us, sweet and mellow, which I very much appreciated. Then Christmas night, another family gathering with more extended family. I really love Christmas, but I’m always a little bit glad when it’s over!

And now, the New Year is coming right up. Our 2006 was SO much better than 2005. We had a rough start with Ivy in the hospital the week before New Year’s Eve, and again the week following, but then it just kept improving. Despite Pete’s lay-off and general (normal) sickness, we can’t complain. Ivy remained in remission, we bought a house, and my mom and gramma moved much, much closer to us. We are hoping 2007 brings all of us (and you!) continued health and happiness.

I must close on a sad note, however; one of our histio community lost his battle with LCH two days before Christmas. He was a little boy named Cale and I don’t even think he had reached his second birthday. If you want to offer your support to his family (mom, dad, big brother, big sister), you can do so at http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=babycale. Oh, we have been so fortunate.

Count your blessings, every one.

Love Allyson, Pete, Jasper and Ivy

PS: New photos!

Thursday, December 14, 2006 7:20 PM CST

Yesterday I threaded the Purple Heart onto Ivy’s Beads of Courage, which signifies End of Treatment. Holy Cow, as Ivy says! Or sometimes she mixes it up and says, “Holy Gosh!” I can hardly believe it. It’s been 21 months of chemo, non-stop. While finishing chemo is certainly cause for celebration, it is also a VERY stressful time. We don’t have a safety net now—if Ivy starts to show symptoms, it will mean scrambling to find another treatment, and quickly. However much we are worrying though, other parents of chemo kids have advised, “Be positive, be positive, be positive!” So, for now, that’s our lofty goal.

And get this: Dr. Garcia, CHO’s newest oncologist, looked in Ivy’s ears and saw no fluid whatsoever! So here we were, getting comfortable with the idea of putting tubes in and now this. What do we do now? I suppose a call to her pediatrician is in order…

We didn’t get to see Dr. Torkildson yesterday, despite the monumental event of Ending Treatment, but we will see him in two weeks, on the 27th. After that, I have no idea how often he will want to see Ivy, nor do I know when he will feel comfortable removing her Broviac. He has said in the past that if she remains symptom-free for three months, he would consider doing it then. Cross those fingers!

Chances are I won’t be updating before Christmas, so please, have a very merry one! And a joyful Hanukkah as well…I think it begins tomorrow. Last Christmas was mixed for us—we spent eight hours in the ER at CHO on Christmas Eve and then Ivy landed in the hospital a few days later. Not this year—no way!

Again, happy holidays to you all and thank you for being with us these past 21 months. It would have been much, much harder without all of your support.

Love Allyson, Pete, Jasper and Ivy

Friday, December 8, 2006 5:26 PM CST

IVY’S EARS
After having Ivy's ears cleaned out on Tuesday, one of the pediatricians checked out her eardrums and told us there was no point in having the hearing test, because we’d get the same results we’ve gotten the last two times. There is still fluid trapped behind the eardrum, so Pete and I decided we would go ahead with the tubes for her ears. I just have to find the time to call the ENT’s office to schedule the surgery. Drat!

There are times when I really think she just needs a speech therapist, but I can’t ignore the times when she definitely mishears things, like last night when Pete said, “Gramma,” and Ivy started talking about underwear, because she thought he said “Santa.” And last week I asked, “Is it trash night?” and Ivy started talking about our yellow FLASHLIGHT. I hope her speech improves by leaps and bounds after this surgery, because I will be very frustrated if it doesn’t!

IVY’S SKIN
We went to UCSF this morning to see the dermatologist, after not being sure at 9:30 am if we even had authorization from the medical group—I was already on the Bay Bridge when I got the call that we had an emergency authorization. Someone at CHO dropped the ball and nobody at UCSF picked it up, I guess.

The derm is a well-renowned doctor published in many journals who has seen lots and lots of LCH and she said it’s not that! She called Ivy’s rash “eczematous,” but wouldn’t say that it’s eczema. Ivy’s docs insisted it wasn’t eczema, nor poison oak, nor a reaction to her flu shot, but this doc wouldn’t rule anything out. So she gave us a stronger steroid cream to use and all in all, this appointment was exactly what I had expected. I wish we could have seen her a month ago when Ivy’s rash was at its worst.

SANTA
We went to the annual holiday party for CHO oncology patients and had a great time. The kids sat on Santa’s lap and Ivy cried (unlike last year, when she just looked petrified). But as we were leaving they both waved to Santa, who was busy cleaning up after the party. Then, we ended up following him out of the parking garage. Did you know that Santa drives a Chevy Blazer? You would think Ivy and Jasper would have expressed some concern at this, but no, they didn’t seem to think it odd that Santa rides a sleigh sometimes and drives an SUV at others…

We are invited to another holiday party for oncology patients next weekend, where each child will receive a gift worth up to $100 (!!!). It sounds like it will be pretty special. I believe Santa will be arriving in a helicopter (not kidding!).

BACK TO IVY
Next Wednesday, the 13th is Ivy’s last chemo!!! We are excited, but also are not letting ourselves get too carried away, knowing how high the relapse rate is for LCH and also mindful of Ivy’s many questionable symptoms and instant relapse last summer (2005).

Thanks for checking in, as always.

Love Allyson, Pete, Jasper and Ivy

Thursday, November 30, 2006 10:50 PM CST

We finally got the referral to UCSF dermatology and wouldn’t you know it, Ivy’s rash is greatly improved. Dr. T advised keeping the derm appointment however, since the rash could change and get worse at any time. It’s still a little bit itchy, but looks more like a rash that is healing, not one that is in the throes of rashiness.

So, medically speaking, Ivy has a busy week next week. On Tuesday she will have her ears cleaned out. Thursday will be her third hearing test and then Friday we journey across the bay to meet Dr. Friedan, pediatric dermatologist. The highlight of the week will be the holiday party at CHO on Tuesday evening. We had a great time last year.

Ivy’s second-to-last chemo appointment went well. She gained back most of the weight she had lost with her stomach virus and maybe has gained in the height department as well. She has a cold (again!), but her lungs are clear.

Ivy, while still being a “terrible two,” is also very cute. We’ve been talking about Christmas, which to her is “Mih-muss!” I told her she would see Santa at the holiday party and she yelled, “Underwear!” because we’ve been telling her that maybe Santa will bring her underwear this year. Her two-year-old associations are so funny.

Jasper is excited about Christmas too, but right now that is overshadowed by his birthday on Sunday, when he will be FIVE! So happy birthday, Jasper!

I’ll update after Ivy’s appointments next week. Thank you for checking in!

Love Allyson, Pete, Jasper and Ivy

Thursday, November 16, 2006 4:30 PM CST

Only two more chemo visits to go...I wish I could say that with confidence, but I am a bit doubtful that it will really all be over in one month.

Ivy is one rashy girl. We are finally getting a referral to a dermatologist, which is kind of an ordeal since CHO doesn’t have one on staff. It means we have to go out of network and you know how HMOs freak out about things like that. The rash has spread onto her legs but it’s mostly the inner elbow that bothers her. We don’t think the steroid cream is helping much, but were instructed to continue with it. Of course, our fingers are crossed tightly that it’s not LCH, but we won’t be shocked if it is.

We tried to teach Ivy to say, “Doctor, I have a rash,” and what she came up with was, “Doctor, RASH!” This sends the rest of us into fits of giggles. It just sounds so funny—she says it so emphatically.

And I guess that’s all for now…Prayers and positive thoughts requested—that we get a quick appointment with the dermatologist and he or she determines that Ivy’s rash is NOT LCH!

Happy Thanksgiving to all of you, since I probably won’t be updating before then.

Love Allyson, Pete, Jasper and Ivy

Thursday, November 9, 2006 6:39 PM CST

We didn’t make it to clinic for Ivy’s follow-up appointment for her rash(es). Jasper passed a stomach virus on to her, and we didn’t want to expose the rest of the immune-compromised kids at CHO. But her rash is slightly improved, regardless of steroid cream, so we’ve discontinued that and are just waiting for it to get better all on its own. We are not THAT worried about it.

For your viewing pleasure I’ve uploaded some photos for you…emailed to me by a friend. These were taken at our friend Elsa’s 4th birthday party, about two weeks ago. Enjoy!

Love Allyson, Pete, Jasper and Ivy

Thursday, November 2, 2006 3:13 PM CST

Ivy’s kind of a mess again, as was reflected by our 3 ½ hour clinic visit yesterday. She has several odd rashes, a yucky cough, and her Broviac is not being cooperative. Dr. T and I are in agreement that these rashes do not look or behave like LCH (yay!), but they are confounding. She has raised, itchy welts on both hips, a spotty, itchy rash on the right side of her belly, another raised, itchy rash on her inner elbow that started off looking like bug bites, and yet another raised, itchy rash under her arm. Dr. T said that the other LCH patient at CHO (he didn’t mention any names, but we know who she is) has also had mysterious rashes on her legs. She’s been seen by dermatologists at CHO, UCSF and Stanford, had it biopsied, and all they know is that there are no histiocytes present.

So Ivy was prescribed a steroid cream to use ONLY on her inner elbow, as kind of an experiment. Will it respond to steroids? Will all of it clear up regardless of the steroid cream? We will have a follow-up appointment next Wednesday.

Ivy’s cold came back with a vengeance, and with it, a nasty cough, so she’s back on albuterol temporarily.

And, her Broviac, well, for heaven’s sake. I couldn’t do the blood draw on Tuesday and in fact, couldn’t even get a blood return in the syringe, so off we went to clinic for some TPA. Nurse Stacey managed to get enough blood out to do the required labwork, but she wasn’t happy with how difficult it was. Then, yesterday, Nurse Rosemary wasn’t happy with it either, so Ivy had two doses of TPA to loosen things up (that’s why the appointment was so long—the TPA has to be ordered, then we wait for it to arrive, then it has to thaw, then they have to give it time to work). Anyway, we hope the Broviac will cooperate for the last three chemo visits. Three more!!! Wow!

Despite the itchiness and the sickness, we had a fun Halloween. Jasper was a lion for the third year in a row (we are getting our money’s worth out of that costume!) and Ivy was a super cute puppy. They wore their costumes to clinic on Tuesday for the blood draw, then we raced to San Francisco on BART to attend the party at my office. The kids were the hit of the party, even if they didn’t utter a single word. We went trick-or-treating with two of Jasper’s school friends and stayed out too late! Some of you are probably hoping to see pictures, but unfortunately our camera broke at Yosemite, so you won’t be seeing new photos for awhile. This is very disappointing, not only because our kids are so darn cute and we’d like to capture that, but we are also not able to take photos of our house remodel. Hmmm…Maybe Santa is reading this…

For other histio parents reading this, I found out that the histiocytosis is one of the diseases under the “umbrella” of the Leukemia and Lymphoma Society. We can benefit from their programs, like financial aid, support groups, etc. I’m not entirely familiar with what they offer, but I do know that they are a fundraising powerhouse! It might be worth a call to your local branch…

Time to sign off…my little puppy is clearly under the weather and CRANKY! We are having a rainy day, so we are staying in and I’m looking forward to an early naptime.

Thanks for checking in on Miss Ivy!

Love Allyson, Pete, Jasper and Ivy

Thursday, October 19, 2006 7:03 PM CDT

Because our update will be short and sweet, let me start off with a funny story (and yes, because I can laugh at myself, you can laugh too).

On Tuesday the kids and I joined some of our friends at a local farm/pumpkin patch and as we were making our way back to the car, I happened to look down at my feet and noticed that I was wearing mismatched shoes! They were both black slip-ons, but one was more of an athletic shoe, while the other was a loafer. I couldn’t believe it! I am not a scatter-brained person at all, and I knew this kind of thing happened to other people, but I never thought I would do something so absurd! My friend and I had a good laugh and I’ve been getting a lot of mileage out of that story this week. So go ahead and laugh. We still snort with laughter every time we think about it.

On to Ivy: Her cold is gone (though it did turn into a yucky cough in the interim). Dr. T said her lungs are clear though. She is at about the 7th percentile for height and the 10th for weight. A tiny girl, but still normal! Jasper is probably at the 10th percentile for weight as well. Dr. T was able to get a glimpse of a sliver of Ivy’s eardrum and didn’t see any fluid. We’ll continue to monitor it. She got a flu shot yesterday and when I called Jasper’s pediatrician to schedule one for him, they said they wouldn’t be available until December 16th! Well, flu season is half over by then. The whole idea is to protect Ivy, so I’m a little annoyed by that. At clinic they said they’d look into Jasper getting his shot there, but generally the insurance companies don’t like to see healthy patients getting immunized at oncology clinics. Whatever. I am irritated.

We are completely consumed and overwhelmed by our house purchase and remodel. I will be a much nicer person when it’s over! We are also still trying to find out the grand total raised by Pete in Ivy’s name for Hike for a Cure. We do know that it’s way more than we ever anticipated, thanks to all of you!

Love Allyson, Pete, Jasper and Ivy

Thursday, October 5, 2006 6:43 PM CDT

I know the first thing on many people’s minds when they log on to this page is, “Tell us about Half Dome!” So, okay. Yes, Pete completed the hike, which is not a surprise. The hike was incredible—there were about 190 registered hikers (this includes tykes like Jasper and Ivy), and last I heard, we had all raised about $95,000!!! We are this close to meeting our goal of $100,000 and I’m sure we’ll make it. Donations are still trickling in to our mailbox. Pete estimated that about 30 hikers made it to the top of Half Dome. Jasper, Ivy and I hiked with the other moms and little kids to the bridge at Vernal Falls, about three miles roundtrip. I carried Ivy up on my back, but she hiked the whole way down herself. Jasper carried himself up and back (he didn’t have a choice!).

We enjoyed meeting other histio families. Ivy was one of ten or so honorees. A couple of the honorees are no longer with us, a few more are still fighting valiantly, like Ivy, and the others appear to have won their battle (some with lingering effects, however). When we participate in Hike for a Cure next year, we hope Ivy is in this last group, minus the lingering effects.

Our Yosemite time was very special, then we moved on to Lake Tahoe. What a beautiful part of the world the Sierra Nevada is. Wow! Our trip included two bear sightings. The weather was stunning the entire time and overall we just really enjoyed the longest vacation we have taken in two years. This is not to say, however, that the entire time we were gone, that we weren’t utterly consumed by our house purchase, poring over home improvement books and IKEA catalogs. We even bought graph paper and a ruler and spent countless hours trying to reconfigure our new kitchen.

We closed escrow yesterday and our real estate agent handed over the keys in a box with a red bow, accompanied by a bottle of champagne (nice!). Later, when we opened the box, we discovered she also had enclosed a generous check for Hike for a Cure (exceptionally nice!).

So off we go on this wild ride. We become home owners, landlords, and house remodelers in one fell swoop. Not to mention normal life with playdates, preschool events, swimming lessons, clinic appointments and jobs!

Speaking of clinic, yes, we did go there yesterday. Ivy got her chemo and if I’ve calculated correctly, only has five more chemo appointments to go! We saw Dr. Beach, which is always a pleasure, and discussed the waxing and waning of her cradle cap, whether or not she should have tubes in her ears, and whether she is delayed in speech. We discussed, but came to no conclusions, unfortunately. I do think her speech has improved in the last few weeks, but she is still very hard to understand much of the time.

Ivy also has a cold and is very droopy. We are hoping it doesn’t turn into something nasty, like it did last winter.

I noticed our ticker went passed 20,000 hits while we were away. Thank you all for checking in on our terrible/terrific two-year-old (yes, the terrible twos seem to have hit).

Love Allyson, Pete, Jasper and Ivy

Thursday, September 21, 2006 3:54 PM CDT

Our big news, which many of you guessed anyway, is that we bought a house!!! It’s a three-unit building that we are buying with another couple. We followed the excellent advice of buying the worst house in the best neighborhood that you can afford. As is, the house is mostly uninhabitable, but it’s a 100-year-old Craftsman with “good bones,” so in a few months it will be habitable AND lovely.

So with the house-buying, planning for Hike for a Cure, back-to-school events and regular life with two kids, we have been BUSY! We are leaving for Yosemite and Tahoe tomorrow, then we come back in a week or so and almost immediately get the keys to the new house and begin demolishing the kitchen. Exciting, but scary!

Donations continue to pour in. If we haven’t thanked you personally, please know that we appreciate it from the bottom of our hearts. We are blown away at how many people care about Ivy. We are really looking forward to Hike for a Cure—there will be well over 100 hikers, all hiking in honor or memory of someone struck with histiocytosis.

Oh right. This website is about Ivy, isn’t it? We are thrilled to report that no news is good news. She’s doing GREAT at the moment. The cradle cap is gone. She’s cute as can be and happy to boot. In three months she’ll be off treatment completely and we can’t wait! She’ll earn her purple glass heart for her Beads of Courage and then we’ll wait with bated breath for the rest of our lives! Yesterday at clinic our little friend Siena, who is one year younger than Ivy, earned her purple heart for finishing her treatment for leukemia. Her mom said they will have a party of some kind to celebrate, but that she’s nervous about that, because what if she relapses? I think that is how all chemo families feel—even the biggest celebrations are fraught with anxiety, because what if…?

Anyway, I have about 4,000 things on my to-do list before our trip, so off I go. Check back for updates about Hike for a Cure (including possibly, a grand total of how much Pete raised in honor of Ivy—actually how much YOU all raised in honor of Ivy).

Love Allyson, Pete, Jasper and Ivy

Friday, September 8, 2006 7:41 PM CDT

Oh my goodness. This update is a little late because we have something going on that could be really great for our family, but right now is extremely stressful and time-consuming. And for now, I’ll leave it at that!

On to Ivy: doing well, kicking a cold (which seemed to be harder on her “immune-competent” brother), gaining weight, making us laugh when she says, in great imitation of Jasper, “Oh, man!”

Dr. T agrees with our having reservations about going forward with the tubes—not that it shouldn’t be done necessarily, but that maybe this particular ENT is a little overzealous with the tubes. Ivy still has fluid, but she still has a cold too. Dr. T said he’s not usually involved in tube discussions (oncologists have more important things to worry about!), and that there is another well-regarded ENT at CHO, but that it is highly uncommon to get a second opinion regarding tubes. Anyway, this is just a long-winded way of saying that we are still undecided. But I was pleasantly surprised that Dr. T didn’t take the doctor “party line.”

Ivy’s cradle cap is better, but not gone. It didn’t immediately get better after her last chemo, so that makes Dr. T think it’s not LCH cradle cap. I don’t disagree, but I also don’t agree. How’s that for ambiguous? Ultimately, I just don’t think LCH is that predictable.

In a bizarre coincidence I came across another family with a girl Ivy’s age who was just diagnosed with LCH. I haven’t met them in person, but found them on the internet on a website not connected with histio AT ALL (that makes me sound like I have a secretive internet life, and well, I do). Anyway, this is a scary time for them, but I hope that being in touch with another histio family is helpful to them in some way (it was for me, way back when).

Those of you who know me, know that I’m not a crier, but boy, opening all these envelopes that are arriving in our mailbox EVERY DAY with contributions for Hike for a Cure and little heartfelt notes, well, it is very emotional! Anyway, please accept our heartfelt thanks for each and every donation. We are truly touched by your generosity. We are getting very excited about our Yosemite weekend!

Until next time (maybe sooner than two weeks),

Love Allyson, Pete, Jasper and Ivy

Thursday, August 31, 2006 6:49 PM CDT

Ivy’s hearing test on Monday showed almost identical results to her last one (in June?). Basically, the nerve or bone or whatever that is behind her ear is fine, but the tympanogram indicates that sound is not bouncing off her eardrum as it should, which means there’s probably fluid trapped behind there.

So today we met with the ENT, who almost right off the bat recommended tubes be put in her ears. I was a little taken aback. He says it’s a quick and easy surgery (3 minutes!) and he does an average of 12 of them per week. If Ivy were scheduled for another procedure requiring anesthesia any time soon, I would say go for it, do the tubes at the same time. But as it stands now, Pete and I have to consider it, weigh it, maybe seek other parental opinions.

Also, if Ivy had chronic ear infections, we’d do it, immediately. But she hasn’t had an ear infection since April 2005.

So anyway…we’ll see.

Ivy's cradle cap continues. I sought opinions from other LCH parents (thank goodness for the internet!) and the general consensus seems to be that it's not cause for panic, that it needs to be watched, that LCH of the skin can "wax and wane." So we are slightly reassured, but we'd be really happy if it cleared up immediately.

On to Jasper news: we are SO proud of him! After only one eight-week session as a Pike (we are talking swimming lessons here), he has graduated to the Eels! Way to go, Jasper!

Donations are trickling in for Hike for a Cure—we are grateful and pleased. Thanks to those who have already sent checks or donated online. Every little bit counts! See the link below to donate (make sure to indicate your contribution is for Hike for a Cure and that you are sponsoring Pete Schoenberger) or email me if you’d like to have Ivy’s brochure sent to you.

Thanks for checking in on our girl!

Love Allyson, Pete, Jasper and Ivy

Thursday, August 24, 2006 6:45 PM CDT

Overall Ivy is doing very well, but she does have a bit of cradle cap that is troubling. Dr. T says it is cause for mild concern, but there is nothing we can do except keep an eye on it. Generally, biopsies of the LCH-induced cradle cap do not show LCH. So okay, we’ll wait and watch.

Today Ivy had her ears cleaned out because she is having her hearing re-tested on Monday. It was gross, to put it mildly. But a huge amount of wax came out, and while that probably won’t impact her hearing, it will at least enable the docs to see her eardrums. It’s been ages since they’ve gotten a good look at them! I told Dr. T that my mother’s instinct tells me Ivy’s hearing is fine and he said it’s usually the moms who know when something is wrong. So there you have it. I guess we’ll find out on Monday if my mother’s instinct is serving me well (it has mislead me in the past).

I mentioned that Pete is training to hike Half Dome; there is a big fundraiser for histio happening next month, called Hike for a Cure. Pete, along with many others, will be hiking Half Dome in Yosemite National Park and asking people to sponsor him. The lucky folks who are on our Christmas card mailing list will be receiving a brochure and sponsorship form. The brochure includes Ivy’s story and a great photo of her, so be watching your mailboxes! BUT, even if you’re not on our current mailing list you can email me (see address below) and I will send you a brochure. OR, you can donate online through the link below. Just remember to indicate that you are donating to Hike for a Cure in honor of Ivy Schoenberger.

And if you don’t know, Half Dome is no small feat; it is 18 miles roundtrip and includes 4,000 feet of elevation gain (and don’t forget, Yosemite Valley is already at 4,000 feet, so for those of us used to breathing near sea level, it’s a big deal!). Anyway, this year’s goal for Hike for a Cure is to raise $100,000. Pete and I are hoping to be able to contribute at least 1 percent of that in sponsorships. Remember, histiocytosis is considered an “orphan” disease and gets no government funding! Families like ours are the ones raising money for much-needed research.

I’ll update next week with the results of Ivy’s hearing test (though we already know she has selective hearing—“Ivy, it’s bedtime!” is met with deaf ears, as is, “Ivy, stop hitting Jasper!”).

Love, Allyson, Pete, Jasper and Ivy

Thursday, August 10, 2006 4:22 PM CDT

As a parent of a child with a rare disease, I sometimes get the opportunity to educate the doctors. Yesterday, for example, we met a third-year resident doing his second rotation through a hem/onc unit. I told him Ivy’s sites of LCH involvement were skin and GI tract and he said, “Yes, those are fairly common.” Ha! I had to inform him that GI involvement is actually very rare, occurring in less than 5 percent of LCH patients. He admitted he had seen exactly three LCH patients in his career: one in med school and the two at CHO, who both have GI involvement, which is a HUGE coincidence. And I’m not criticizing this doctor; I liked him. It’s not his fault that LCH is so rare and that very little time is spent on it in medical school. Most docs will never, ever see it, even pediatricians.

Ivy is doing well, still growing, both lengthwise and weightwise. She was kind of shy at clinic yesterday, almost like it wasn’t very familiar to her. But even for me it seemed like ages ago that we had last been there, even though it was only two weeks.

Pete and I have been suffering from a chronic, vague unease about Ivy. She had cradle cap for a couple weeks (now gone), has been battling diaper rash for a couple months, and has many little skin oddities that make us nervous. Today I told Dr. T that I wouldn’t be surprised if we weren’t completely done with treatment in December. He was quiet for a moment, so I said, “You won’t be surprised either, will you?” He then said that no, he wouldn’t be, that LCH can be a chronic disease that lasts for a long time, but then ever the good doctor, he added, “But it’s very reassuring that Ivy’s disease responds so well to such low-level treatment.” And this is true. We do not appear to be fighting a losing battle.

Our trip to San Diego was wonderful, despite Alaska Airlines issuing us boarding passes for four seats scattered all over the plane. The biggest annoyance, not surprisingly, was having to do Ivy’s vancomycin infusions every eight hours. It was such a relief to be done with that! Anyway, we had good times with cousins, grandmas, aunts and uncles. I’ve uploaded some photos—check them out!

We are in the full swing of summer, eating strawberries, blackberries and tomatoes from our garden. (The lettuce wasn’t so good.) Jasper loves the strawberries, Ivy, the tomatoes. They both go for the blackberries. We are watching our kids grow up so fast! Ivy copies everything Jasper does, good and not-so-good. He is four, so his big thing is having an audience. “Watch, Mom!” is what I hear over and over, so I turn to see him jump or throw something or do a silly dance. Now I hear, “’Ahtz, Mom!” and I turn to see Ivy doing equally thrilling acts. These two are quite a pair.

Pete is busy training to climb Half Dome next month for a big fundraiser we are participating in (for histiocytosis, of course). More to follow on that in coming weeks…

Can I ask all of you to send as many positive thoughts, prayers and good vibes as you can spare to Dillon? He has been fighting so hard for so long now against hepatoblastoma—we want this battle to be won, and soon! Read about him at www.caringbridge.org/ca/dillon. Remember, they were the first oncology family we met at CHO, way back in March 2005.

Thanks for checking in. Love to you all!

Allyson, Pete, Jasper and Ivy

Thursday, July 27, 2006 10:29 AM CDT

They let us go home Tuesday, after a festive morning of jewelry-making and live music in the playroom on 5 South. We had to race home to get the delivery of meds and meet the nurse who showed us how to administer the meds via a pump. It’s an hour-long infusion which we have to do every eight hours until Sunday night.

Then yesterday we had our regular old clinic appointment. Ivy’s lost a teeny bit of weight, which isn’t surprising, given her circumstances the past week. But she’s taller! Also, her face rash cleared up quite a bit, which lends a lot of credence to Dr. T’s theory that it is sun sensitivity caused by one of her meds—she didn’t see the sun for five whole days!

When we checked out of the hospital we accidently left some of Ivy’s clothes in the room, so yesterday we went back to get them. The nurse handed them over and as I turned to leave, Ivy tugged my hand to go the other way and made a noise of discontent; she was telling me she wanted to go back to her room on 5 South! I was shocked, amused and also relieved that her stay there hadn’t been too traumatic for her. She didn’t want to leave!

So now we are frantically packing for our trip to San Diego this afternoon. The amount of stuff we have to bring is overwhelming, mostly because of the meds, pump and Broviac equipment, but we’ll manage. We have a note to present to the airline in case there are questions and also contact info for San Diego Children’s Hospital, which I am sure we won’t need.

Congratulations to Larry, Ming and Jazmine on the arrival of Adam! And thanks to the Schoenbergers, Levines, DeZeregas, Jaan and Adria for visits to the hospital, deliveries of food and taking care of Jasper. We are so grateful.

Have a great weekend!

Love Allyson, Pete, Jasper and Ivy

Thursday, July 20, 2006 11:19 AM CDT

--UPDATE#2, Saturday afternoon--
As hospital stays go, this one isn't too bad. We have our own room on 5 South, in the immunocompromised unit; it's not that Ivy needs to be in this unit, but there was a bed available. These rooms are very nice, relatively speaking: we have a computer, a bay view, a shower, and the most precious of all--privacy!

They've identified the bug; it's a type of staph, and Ivy's been getting the right antibiotic for it, so that's good. They start out with the broadest spectrum antibiotics, then gradually get more specific as they learn more about what's growing in the culture they took.

We'll be here until Monday at the earliest. We told Dr. T and Dr. M that we are going out of town on Thursday and neither are happy about that. They haven't forbidden it though. We'll have a home nurse come by to show us how to administer the medicine through the Broviac and poor Ivy will have to bring it down to San Diego. That won't be fun, but worse things have happened.

All for now--we are anxiously awaiting a dinner delivery...

--UPDATE, Thursday night--
The hospital called us at 9:30 tonight to report that the culture they took from Ivy's Broviac last night is growing some kind of staph infection, so they wanted her to check in immediately.

We packed up, then Pete took her to CHO to be admitted. I'm home with Jasper tonight, but will cover the day shift tomorrow, so Pete can go to work. It's a minimum 48-hour stay, so she probably won't be home until Sunday.

What a great weekend this will be. NOT.

We ended up at the ER last night, because Ivy had a fever of 101 . When we arrived at CHO, it had climbed to 102 .

As a matter of course for a child with a fever that high, who may be immunocompromised, who has a central line, it means a trip to the ER for antibiotics. It could be a central line infection which could lead to a blood infection and that would be very, very bad.

The whole ordeal took about four hours.

So we got home after midnight, had a rough night (except for Jasper, who had a sleepover with Grammie and Grampa), and now we shall see what the day has in store for Ivy. She seems mildly feverish and mildly cranky.

We have to go back to CHO today for the second dose of antibiotic.

We are happy this happened this week and not next, because next week we are going to San Diego for my high school reunion. I know you are asking, 10th? 20th?, so I will reveal: yes, my 20th! It will be Ivy’s first plane trip (and Jasper’s seventh—before Ivy was born, he was quite the experienced traveler!).

Now, do we have time for a mommy-brag about Jasper? Okay, then. He’s a swimmer! He now can dogpaddle across the deep-end, and sometimes put his face under! He is so proud of himself, but not nearly as proud as we are of him. Way to go, Jasper!

Let’s hope for no more updates until after next week’s clinic appointment, okay?

Thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Thursday, July 13, 2006 3:58 PM CDT

ABOUT IVY
We had a clinic appointment yesterday and came away feeling a little unsettled. Dr. T was on the inpatient rotation so we saw Dr. Rafael, who is a Fellow, and Dr. Golden, whom we like a lot (which isn’t to say we don’t like Dr. Rafael—we do).

The skin on Ivy’s face was looking terrible—we are still dealing with that and still not sure what it is. All of the docs say it’s not eczema, but many parents have asked me if Ivy has eczema, because it looks a lot like it. Dr. Rafael said it could be an LCH flare and this is what unnerved me. If that’s the case, the chemo’s not working as well as it should be. We don’t even want to ponder this possibility. Dr. Golden was more vague, but said that she’d talk to Dr. T and get the referral process going so Ivy can see a dermatologist. We are happy about that.

Ivy also had a weird thing going on under her eye, which looked sort of like a black eye and sort of like a sty. Again, the docs are mystified, but don’t seem too concerned. It appeared on Sunday, but is looking much better today. In fact, so is her skin, which you might think is a relief, but actually it’s mildly concerning, because since Ivy just had chemo, maybe it’s responding to that, in which case it could be LCH. We’ll try not to fret too much until we know more…

But other than these two concerning things, Ivy is really doing well. She was so energetic at clinic and so popular with all the staff, even those we don’t work with. “Is this Ivy?” they say, “She has grown up so much!” Ivy said “broviac” for the first time yesterday. Of course, it won’t be the last. We will be dealing with Broviac issues until March at the very earliest. On Tuesday our neighbor’s five-year-old granddaughter was at our house and I said that we had to leave to go to Children’s Hospital. When she asked why we had to go there, Jasper said, “Because Ivy has this Broviac, see? And they have to suck blood out of it to make sure it’s healthy.” He looks at me. “Right, Mama?” For some reason, this made me so proud. He understands it, he can explain it and he’s only four years old!

ABOUT CLEVELAND
We had a wonderful long weekend in Cleveland, which is one of those underrated cities. We could have easily spent another few days there and not seen everything. Did you know there’s a National Park less than half an hour south of the city? No one talks about it, not even the tourist literature you get at the hotel. Some maps don’t even show it. It’s like they don’t want anyone to know about it! But Pete and I discovered it and had barely enough time to drive there, stop at the visitor center, and take a short walk to a waterfall (and all the while there was thunder and lightning—very exciting for these California natives!). Anyway, it’s lovely and well worth visiting. We also went to an Indians baseball game (go, Tribe!), the Rock and Roll Hall of Fame (Cleveland rocks!), and drove out to a cute little town on Lake Erie, called Vermilion (we actually know someone who hails from there).

And, of course, we went to The BIG Meeting, which was wonderful. The best part was getting to meet so many families who have traveled a similar journey, through the world of histiocytosis, pediatric oncology clinics, sudden hospitalizations. Many of the families we had already “met” on the internet and it was nice to hear, when I introduced myself, “Oh, you’re Ivy’s mom! We read Ivy’s updates every week!” The doctors who gave presentations were excellent and we did learn quite a bit. Unfortunately, as always, GI involvement is not mentioned or it is casually noted in passing. It is classified as neither high-risk nor low, but one doctor, who gave the incidence rate of GI involvement as being <5% (of all LCH cases), admitted she thought the incidence rate was probably higher than that, that it is probably underdiagnosed. I agree. And as always, I make a point of asking, “Is GI involvement high risk or low?” and as always, the answer (or non-answer) is vague: “We don’t really know.” “We don’t see it too often.” “Well it’s serious, but it’s not classified.” I’m not disappointed, I expected as much.

We also received a book called Histio Histories, which contains 70-80 personal stories of histiocytosis, submitted by patients or their parents. Of course, Ivy appears in there. Every day I find time to read a handful of stories and am struck at how varied they are (though the universal theme at diagnosis is shock, fear and despair). Some kids go through treatment for six months, then are done forever. Some have been getting chemo for five years! Some have been in remission for six years, then relapsed. And of course, some have succumbed to their disease (and even so, the families submitted their stories, attended the meeting, and are still hoping to learn as much as they can and raise as much money as they can—they inspire me so much).

Anyway, Pete and I are very thankful that we were able to attend such a great meeting. We are impressed beyond belief at the energy and dedication of those who put it on, those who are riding bikes across the country, those who helped with Histio Histories, and every single family who made the trek to Ohio to attend (including one from Viet Nam!). Thank you all!

This update has gotten to be quite long, so I’ll stop there. I’ve uploaded some new photos—the required cute-kid shots, as well as some photos of Cleveland.

Thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Wednesday, June 28, 2006 11:19 PM CDT

AUDIOLOGY APPOINTMENT (MONDAY)
Ivy’s hearing was tested Monday morning. Her nerve (?) is fine, but she may have fluid behind her eardrum which could be causing mild hearing problems. This, obviously, is temporary. The next step is to have her ears cleaned out so the docs can actually see if there’s fluid behind the drum. She has another hearing test scheduled for August 28. Hopefully the fluid will have drained by then and everything will be normal.

PEDIATRICIAN APPOINTMENT (TUESDAY)
Jasper and Ivy both had check-ups yesterday. Poor Jasper—his health has been so neglected since Ivy’s has been so demanding. Luckily for all of us, Jasper is robustly healthy and hasn’t needed to see a doctor since November of 2004, and that was only a routine check-up. He had an appointment scheduled last December, but I had to cancel hours before so I could take Ivy to an emergency appointment at clinic (this was when she was being hit with a triple-whammy of new chemo drugs, rotavirus, and breathing problems—she landed in the hospital!). Anyway, Jasper is doing great, healthwise. He is on the skinny side, but that’s news to no one; you can tell by looking at him. He got a Hep A vaccine yesterday, as well as a TB test, and didn’t even flinch! He is a tough guy! In fact, during the appointment, he kept saying, “Mama, when can I get my shot? Let’s go get my shot!” What an unusual child. Actually, he was most interested in getting the prize at the end of the ordeal, but still, what kind of child asks for a shot?!

Ivy’s appointment was, not surprisingly, anticlimactic, since she’s been seen by doctors almost weekly for close to a year and a half now. We were also rushed since we had to get to CHO for a blood draw (darn Broviac wasn’t cooperating!), so we touched on many topics regarding Ivy, but didn’t get to close the loop on many of them. Her pediatrician will be the one to clean out her ears, however, so we will be seeing him again soon. He really is a great doctor. My children are both usually reserved with most people at first, but with him, neither one of them would stop chattering away! I also like that he calls every few months to get the latest on Ivy. He can also log into the computer system at CHO to check on her, but he says the updates are WAY behind.

ONCOLOGY APPOINTMENT (WEDNESDAY)
This morning we were back at clinic. Ivy gained a whole pound in two weeks! She is doing really well at the moment. She got her chemo and off we went. We won’t be back there for another two weeks, which is nice, but weird. What will I do with my Wednesday mornings? Oh, yeah, go to work.

THE BIG MEETING
Next weekend, July 7-10, Pete and I will be in Cleveland, Ohio for a histiocytosis conference called The BIG Meeting. It is called that because it’s being held in conjunction with The BIG Fix, which is a cross-country fixed-gear bicycle ride, happening at this very moment, whose purpose is to raise money and awareness for histiocytosis. The riders started in Davis, CA on June 17 and will conclude their undertaking in Boston in the middle of July. They will be passing through Cleveland on July 8 and 9, so a dad there organized a meeting to be held for families. Eight or so of the biggest doctors in histiocytosis will be there, including Dr. McClain from Texas Children’s who treats more histio kids than anyone else in the country. Maybe even the world. And the amazing thing is that he will be one of the guys riding a fixed-gear bike across the country!

Anyway, Pete and I are looking forward to this weekend VERY much. It will be time away, just the two of us, as well as a rare and welcome opportunity to learn more about histio and meet the many families we have encountered on the web also struggling with this despicable disease. AND, the 9th is Pete’s birthday, so don’t forget to send birthday wishes!

As always, thank you so much for checking in on our terrific two-year-old, whose new favorite words are “Yeah” and “No.” Luckily, she uses the former much more than the latter. So far.

Love Allyson, Pete, Jasper and Ivy

Thursday, June 15, 2006 6:19 PM CDT

UPDATE AND CLARIFICATION:

The update is that Ivy's hearing test has been scheduled for Monday morning at 9 (ugh!).

The clarification is that Ivy is NOT done with chemo. I guess I didn't write that clearly enough. At this point we are transitioning from weekly chemo to BI-WEEKLY. And that will be until December, if all goes well. Here we are, nine days since her last chemo and so far, so good. She's been battling a diaper rash, but to my expert eye (and I am an expert when it comes to diaper rashes!), it is NOT an LCH rash. We've been giving her lots of air time and it does seem to be clearing up.

Have a great weekend!

HAPPY BIRTHDAY, DEAR IVY!!!

She’s two! Woo hoo! Phew!

To mark the occasion, Ivy decided once again to make an appearance on the growth charts, where she is now around the first or second percentile in both height and weight. This was a pleasant surprise for all of us, including Dr. Torkildson.

Yesterday was the last weekly chemo, so after this, you may not get an update for two whole weeks. We are, of course, excited by this, but also quite nervous. It would be devastating if her symptoms were to reappear. We so want this stage of our lives to be over! Starting next Wednesday we will be sitting on pins and needles, waiting and watching.

At clinic yesterday Ivy was in rare form, spinning, grinning, and talking up a storm. Unfortunately, she is difficult to understand. She says many words and chatters quite a bit, but most people have a hard time figuring out what she is saying, including Dr. T, so he is referring her to have an audiology exam. I am pretty sure she does not have a hearing problem, but at least we can rule it out. I am also pretty sure that her speech is within the normal range for a 2-year-old, but it will be nice to have that confirmed as well. I have no idea how long it will take to schedule something like this, but I will keep you all informed.

And now, back to me. Yesterday, for the first time, I donated blood. I am embarrassed that it took me 37 years to get around to it, especially since it was so easy and almost painless. Yesterday I learned that only 4 percent of eligible donors actually donate, and that there is a chronic blood shortage. So, here is my plea: PLEASE DONATE!!! Each donation saves three lives. You may recall that Ivy had a blood transfusion this past winter. Thank you, donor! It’s easy, it’s free, and if you’re not out there trying to cure histiocytosis (or cancer, or hemophilia, or...) then this is the next best thing. Get out there and do it! Thank you!

And here is where I wish Pete a wonderful Father’s Day: Happy Father’s Day, Pete! You’re a great dad and Jasper and Ivy are lucky to have you. Happy Father’s Day to all the other terrific dads out there too.

We also need to thank the senders of the birthday packages: Gramma, Nana, and the Roots. And thanks to those who made Ivy's birthday special [Schoenbergers, Levines, DeZeregas (x2), and one Hitt].

Until next time (at least two weeks away, we hope!),
Love Allyson, Pete, Jasper and Ivy

Thursday, June 8, 2006 5:01 PM CDT

We’ve had a couple of weeks of weight gain after many weeks of holding steady, so that was good news. All the staff at clinic commented on how grown up Ivy is all of a sudden…well, yes, she will be two next week!

Yesterday was Ivy’s SECOND TO LAST week of weekly chemo. Then, she will be getting chemo every other week until Christmastime, if all goes well. It will be weird to not have to go to clinic every single Wednesday morning.

You can check out the photos from Camp Okizu—the disposable camera did a terrible job of capturing that special place, but it’s all we’ve got. The photo up top is Ivy with the lodge in the background. By the way, yesterday Dr. T said, “I heard Ivy was a wild woman at camp, showing off her dance moves!” Word gets around…

Thanks for checking in. Isn’t it great how boring this update is?

Love Allyson, Pete, Jasper and Ivy

Thursday, June 8, 2006 5:00 PM CDT

Tuesday, May 30, 2006 1:43 AM CDT

Within half an hour of arriving at Camp Okizu, I knew the weekend would be over way too soon. It was WONDERFUL!

We were greeted by smiling, helpful counselors, who saw to it that our belongings were delivered to our cabin by the time we finished dinner. After breakfast on Saturday and Sunday mornings, the kids (even the babies!) were whisked off to age-appropriate activities, while the parents split into two groups to share their stories, ask questions, and support one another. The tissue box made a double circuit around the room, I think. After hearing these stories, we feel so lucky that Ivy does not suffer ill effects from her chemo, that she is not permanently disabled, that her prognosis is good.

We had been hoping to meet another histiocytosis family, but of course, we were the only one, though there were a couple of other families with non-cancer diagnoses. I wish I could share every story here, because I found them all amazing.

After the tear-fest, the fun began. Jasper caught his very first fish. When I asked him if he’d like to go fishing, he said, “Yeah, maybe I’ll get some toys!” The only “fishing” he’s ever done is at school fairs, where you use a toy fishing pole and “catch” cheap trinkets. So, he caught his fish, posed for a picture and threw it back, which is how they do it at Camp Okizu. He did archery, went on a bug hunt, and did the Ropes Course, which I won’t be able to explain here. It’s a bit like rock-climbing, where you put on a harness and clip yourself onto some ropes and climb trees, swing on ropes, etc. I took some photos, which may help explain, but we forgot the digital camera, so I am waiting for the actual photos to be developed. Even Ivy got to participate in the Ropes Course—we hooked her up so she could swing through the air, one of her favorite things. There was a contraption called the Zip Line, where you “fly” about 100 yards across a ravine. Again, the photos will make this more clear. Wait until you see the one of me walking across a log 25 feet in the air.

Camp Okizu offers family camp, which we attended, oncology camp and SIBS (Special and Important Brothers and Sisters) camp for kids 6 and older. I told Jasper in two years he can spend a week there without his parents. He is thrilled by this idea. And all of us can’t wait until next year when we can go again.

I am so excited about Camp Okizu that I am babbling. It is so very special.

And Ivy is well. The diarrhea is gone, so thanks for all the prayers, crossed fingers and spitting over shoulders—it was just a lousy virus!

Love Allyson, Pete, Jasper and Ivy

Thursday, May 25, 2006 0:53 AM CDT

Those among us who are superstitious may want to knock on wood right about now, because Ivy went 24 hours without a bowel movement of any kind, then around 5 pm today had one that was still loose, but improved, according to the poop inspectors (that would be Pete and his mom).

We are walking that fine line between trying not to get our hopes up too high, but also wanting to be positive.

Dr. Torkildson said if the diarrhea is not gone by early next week, he will refer Ivy to the gastroenterologist, which is good, but it reminds me how difficult it is dealing with the gastro office. We love Children’s Hospital and have received excellent care in almost every regard, but the one blight on our experience there has been scheduling anything with the gastroenterologist’s office. Well, we will cross that bridge when we get to it, but here’s hoping we won’t have to!

I think the rash on Ivy’s face looks a little worse, but Dr. T doesn’t think it looks like typical LCH. I disagree with this, because I don’t think there is a “typical” LCH rash, but I didn’t tell him that.

And it looks like we’ll make it to Camp Okizu this weekend. We found out that our friend Lauren from clinic, whom we see every fourth week, will also be there with her family. So that makes two families we will know and we are looking forward to it even more. Jasper can’t wait. We will be bringing our traveling pharmacy along with 10,000 diapers, 40,000 wipes and 600 kinds of diaper cream, just in case the diarrhea continues. And, of course, the Fahrenheit thermometer.

We have loved reading all of your messages in the guestbook. It means a lot to us knowing that we are supported and that Ivy has all of you rooting for her. Thank you!

Love Allyson, Pete, Jasper and Ivy

Tuesday, May 23, 2006 12:08 AM CDT

Ivy is not improving…since I last updated:

Weekend: much diarrhea, including mucous; acting slightly under the weather; eating okay, but not great.

Monday: same as above, but had a fever of 101.3 when she woke up from her nap in the late afternoon. By the time Pete and I arrived from work around 6 pm, the fever was gone and Ivy was eating crackers.

Tuesday, 2 am: another fever, this one 38.2 C (boy, was that fun, running around the house in the middle of the night, trying to remember how to convert Celsius to Fahrenheit—it turns out you multiply by 1.8, then add 32 and this got us to 100.76). We unzipped her jammies, pulled a leg out and the fever went away almost immediately.

Tuesday morning: more diarrhea, but good spirits.

Technically, we should have called Children’s Hospital to reports these fevers, but since they went away so quickly, we decided it was not imperative. Today, when we drop off Ivy’s labs, I will tell the nurse and they can decide what to do next, if anything.

We are still REALLY hoping it’s just a persistent virus and we are also really hoping that we can still make it to Camp Okizu this weekend.

Thanks for checking in and thanks especially for all the prayers, positive thoughts and crossed fingers that Ivy is fighting a virus and NOT LCH!

Love Allyson, Pete, Jasper and Ivy

Thursday, May 18, 2006 3:12 PM CDT

MINOR UPDATE: The rotavirus test came back negative. Darn it darn it darn it. Yesterday the diarrhea was increasing. I haven't gotten a report today (I'm at work). Poor little girl.

Okay, enough with the boring updates. We are once again worried about Ivy. She’s had diarrhea since Monday night.

Dr. T, non-alarmist as usual, suspects something relatively harmless, like enterovirus. This could account for both the diarrhea and the cold symptoms. I suggested rotavirus, but he didn’t think so. However, just to appease me, he agreed to test for it, especially since Ivy was thoughtful enough to leave a stool sample right there in clinic. I don’t think they can test for enterovirus.

Ivy was also uncharacteristically uncooperative yesterday. Up until now, I had been so proud of her, the way she would follow Renato into clinic, climb up onto the chair, sit patiently while he took her blood pressure and temperature, then toddle over to be measured and weighed. But yesterday, he couldn’t get an accurate BP nor height, and the weight? Forget about it! Dr. T joked that Ivy didn’t want us to find out that she’s lost weight.

Anyway, it was not one of our better days in clinic…

We are still planning to go to Camp Okizu (pediatric oncology camp) next weekend, but I have to say, we won’t enjoy it very much if we are thinking the LCH is back. We are really hoping for a positive rotavirus result or that the diarrhea goes away soon.

Ivy is still happy and cute though. She now says “Thank you,” (day yew) and appears to be reciting the alphabet, although her version is more like A, I, O, A, O.

Well, Ivy’s been awake for about an hour now, and I am about the change the second diarrhea diaper of the day…

Please send positive thoughts, prayers and whatever else you can muster that it’s just another lousy virus attacking our baby. It’s so frustrating that Ivy’s manifestation of LCH mimics so many common childhood ailments…and that we can’t do a simple blood test or scan to confirm that it’s not LCH.

Love Allyson, Pete, Jasper, and Ivy

Friday, May 12, 2006 7:21 PM CDT

I didn’t rush to update this week, because it’s another boring update. The spots on Ivy’s face are worse than ever. They are most apparent when she first wakes up, then seem to fade as the day goes on. It could be any of a zillion things, I guess, but I sure would like to know! We ran into our pediatrician at the chicken shop yesterday and he didn’t even comment on them, so I guess they aren’t that weird-looking.

Ivy had an anxiety-inducing diaper rash over the weekend (anxiety for her parents, I mean), but we got it under control in a couple days, thank goodness. We know if it were LCH, there would be no controlling it, at least not with our at-home remedies.

And now Ivy seems to have a minor cold—no biggie, just a runny nose. Jasper may have it too.

See? BORING.

We are wishing all the mommies out there a wonderful Mother’s Day!

Love always,
Allyson, Peter, Jasper and Ivy

Thursday, May 4, 2006 6:15 PM CDT

Yesterday I asked Dr. T what he thought of the spots on Ivy’s face. He said he’d been pondering that, but that they don’t look like classic LCH, which is true. However, it is also true that the LCH rash can have so many variations. It can look like chicken pox or flea bites or pimples or pinpricks or be scabby or raised or flat or any combination of the above. It's tricky that way.

What’s on Ivy’s face looks like pimples (and maybe a bit of eczema) and it bears no resemblance to her LCH rash, which was never on her face anyway. But Dr. T said if it gets worse when we cut back on chemo in June, then she will be referred to a pediatric dermatologist at UCSF (CHO doesn’t have one, which is shocking!). If the dermatologist thinks a biopsy needs to be done, we’ll do it, but Dr. T is concerned about putting a big ugly scar on Ivy’s sweet face.

So all in all, I like Dr. T’s thoughtful, doctorly approach and am in full agreement with him. So for now, we wait.

I think we are in Week 21 of 26 for weekly chemo, so very soon we will be dropping down to every two weeks. It will be exciting, but we will be on edge. I know of too many kids, with LCH, leukemia and other types of cancer, who relapse quickly after reducing or stopping chemo. In fact, this is what happened to Ivy last summer. So prayers, positive thoughts and good vibes will be needed very soon!

We are enjoying our weather and late sunsets, spending lots of time in the backyard. We have a swing hanging from the big elm tree and Ivy LOVES it. She likes to swing high and fast and we are rewarded with giggles and squeals the whole time.

Jasper got a haircut on Sunday and somehow looks older and younger at the same time. He made me proud on Tuesday after his tumbling class. After class, most of the kids (3-4 year-olds) run and climb and go kind of wild while the parents are putting the mats away. Ivy was standing on a partially folded mat and two little boys were trying to fold the rest of it on top of her. There’s no way they could have succeeded, as the mats are heavy and even I struggle to fold them up, but Jasper came running over and said, “Hey, watch out for Ivy, you guys!” and pushed the mat back down. The battle continued for a few minutes with Jasper protecting his baby sister very determinedly. I was so proud of him! Of course, had we been at home, it’s very likely that Jasper would have been the one trying to squish Ivy with the mat, but still, he wouldn’t let anyone ELSE treat his sister that way!

I received a lovely Mother’s Day gift last week (yes, a little early). My very talented friend Melanie made me a necklace with jasper stones and an ivy pendant. How perfect is that! I guess if we have another kid we’ll have to find a name that can be incorporated into jewelry…Anyway, there’s a way to post photos in the text here at Caringbridge, but I don’t know how (if anyone in the know cares to share, I’d be grateful!). But if you go to this link and scroll down to the third necklace on the right, you can see it: http://twotreesbeads.com/browse_former_necklaces.htm

Also, go to the main page: http://twotreesbeads.com/ Check out Melanie’s gorgeous designs! It’s very affordable and she does custom jewelry too, with a very quick turnaround. (Melanie, I am very impressed!)

Thanks for checking in on our girl. She’s doing well and we are beyond grateful.

Love Allyson, Pete, Jasper and Ivy

Thursday, April 27, 2006 6:02 PM CDT

Just another boring update, but we like it that way! Boring=everything’s stable!

Ivy has been doing so well for so long that Dr. T decided she doesn’t need to be seen by a doc each week. If her counts are fine, we will pop in for chemo and be done! So that’s what we did yesterday. I think Ivy will be seen every other week, unless there is something unusual going on.

My trip to North Carolina was short, but oh-so-worth-it! I had so much fun with my girlfriends that I didn’t even mind the horrific jetlag. The food was excellent, the weather superb and the conversations fascinating (to us, anyway!). It was a wonderful little respite.

New photos…the one at the top of this page is obviously from the Monterey Bay Aquarium. As you can tell, Ivy did not take kindly to being eaten by a giant clam.

Thanks for checking in!

Love Allyson, Pete, Jasper and Ivy

Thursday, April 20, 2006 1:03 AM CDT

We had a great time in Monterey. The aquarium was, of course, totally amazing. My favorite was the octopus, who seemed to be putting on a show for the crowd—oozing from corner to corner, tentacles suctioned to the glass. Very cool. Pete loved the giant deep sea exhibit, with the tuna, turtles and ugly sunfish. Jasper seemed thrilled the most by the plexiglass tunnel that you stand in while water gushes over you (of course, you don’t get wet—you get the excitement of standing under a waterfall without the shocking chill of the water!). And Ivy seemed enchanted with just about everything. Well, maybe her favorite was the life-size blue (gray?) whale suspended from the ceiling. It was pretty impressive.

We also had a little beach time, lots of good food and then somehow the Easter Bunny found us in our hotel room, so we had fun with Easter baskets too. It was a good trip!

Ivy did come down with a cold on Saturday, which Dr. T identified as likely being an adenovirus—his clue was her slightly goopy eyes. She also has had spots on her face for weeks now. They do not resemble LCH in the least, so we are not worried too much about them, but it is curious. They look a bit like pimples and are mostly on her cheeks and chin. They’ve gotten more pronounced lately and everyone is mystified by them.

Ivy’s weight is up a whopping 3 ounces this week, but even that was a pleasant surprise, because it seemed she was not eating very much in Monterey. The majority of her diet (and Jasper’s too!) was bread and French fries. Since we’ve been back home we’ve been pushing broccoli on them, but luckily they like it! We haven’t tried Boost yet, but I saw it in Walgreen’s and was mortified at the price. We have a few cans of Kindercal given to us by CHO, and it’s the same concept, so maybe we’ll try that first, disguising it in smoothies…

I am up late tonight updating Ivy’s webpage, because tomorrow I will be getting ready for my Girls’ Weekend in North Carolina! I leave tomorrow night and am very excited. Also a bit nervous as it will be the longest I have been away from my kiddos. I’m sure they will be fine with Daddy (of course!), but still…One of the things I am looking forward to most is being able to read on the plane for hours WITHOUT INTERRUPTION. Yippee!

And a message for Marita Thomson if you check in again: please don't hesitate to contact me at the email below if you have any questions or ANYTHING AT ALL! I know this time right after diagnosis is horrifying and it really helps to be in touch with others who have been through the same thing. My heart goes out to you and your family.

Alright, take care, everyone…until next time,

Love Allyson, Pete, Jasper and Ivy

Wednesday, April 12, 2006 7:57 PM CDT

Just a real short update this time, since we are trying to get on the road to Monterey tonight…

Ivy’s appetite has greatly increased since she’s been off the TPN, which is GREAT news! Unfortunately, she’s still not gaining weight, so Dr. T suggested trying Boost, which I guess is some kind of calorie-rich supplement. I don’t think anyone is terribly worried about Ivy’s weight yet, but the docs always recommend packing on the calories as much as possible (we’ve gone through this with Jasper too—he’s always been near the bottom of the weight charts and he’s our healthy one!).

Everything else is stable. Week after week, Ivy’s blood counts have been great; Dr. T seems to have really hit on the magic dose of chemo for her.

Thanks for checking in and have a wonderful Easter and/or Passover!

Love Allyson, Pete, Jasper and Ivy

Thursday, April 6, 2006 6:05 PM CDT

Only three more nights of TPN! That’s the official word from Dr. T, that we can stop the TPN. But we’re going to finish out our supply, as it costs a couple hundred dollars a day and the calories certainly won’t hurt our petite Miss Ivy. She actually didn’t gain any weight this week, but her appetite seems to be increasing with the tapering of the TPN, so that’s why Dr. T thinks it’s okay to stop. We are going to Monterey next week and it will be nice not to have to schlep the TPN pumps, bags and supplies with us. I will be stuck in a work-related class for two days, while Pete and kids are off having adventures.

Ivy is doing really well. She looks great and she acts great and everyone is commenting on it. We are so CALM right now. We feel so lucky. Ivy has almost no ill effects from the chemo, unlike so many other kids we hear about, who are suffering from nausea, pain, neuropathy, neutropenia, and the like. (And even though I’m not superstitious, I just knocked on wood.)

She loves to dance now, and it’s always accompanied by clapping (in time!). She will dance to rock songs on the radio, the music from her Leapfrog schoolbus, as well as any music we happen to be making ourselves. It’s very cute. (Then Jasper says, “OF COURSE it’s cute!”—his new thing is to say “of course” about everything: “Of course you won’t let me watch a movie!” “Of course I will eat my dinner!” “Of course I don’t want to go to bed!”)

I finally put up some new photos. You can see how Ivy is really not a baby anymore. I can’t believe she’s almost two.

Thanks for checking in…hope everyone is enjoying their springtime. Today is the first day we haven’t seen rain in I don’t know how long. In fact, it’s a glorious sunny day out there (so why am I sitting at the computer?!).

Love Allyson, Pete, Jasper and Ivy

Thursday, March 30, 2006 5:40 PM CST

Dr. T is very pleased with Ivy’s overall weight gain (despite it holding steady over the past week) and wants to begin tapering the TPN! Yay! They will be cutting the volume almost in half, though it will still run over 12 hours. Fingers crossed that her weight continues to climb!

Dr. T clarified that there will be no scans of any kind on Ivy, because her disease doesn’t show up on scans. I am happy about that—we don’t really enjoy starving her for hours and putting her through the anesthesia.

So we just continue merrily onward with treatment. I believe we are at Week 15 of 26 for the weekly chemo, then we go to biweekly for another 26. This will be a big milestone in my opinion; I don’t think anyone spends more time in clinic than we do. Don’t get me wrong—we are very lucky not to be in the hospital and are very thankful for that…but the routine is getting a little old.

We just got our confirmation today—we will be going to Okizu Family Camp for Memorial Day weekend. This is a camp for pediatric oncology patients and their families. Last year we had to cancel our reservation at Berkeley Family Camp because of Ivy’s illness, so this will be a nice way to make up for it. (And how wonderful that we won’t be doing the TPN at that time—though I’m sure they’re used to that and much more at Camp Okizu.) Anyway, we are really excited!

I guess that’s all the medical news on this front…Ivy continues to act more like a two-year each day, for better or worse. Yesterday I had to strap her into her stroller kicking and screaming as we left Children’s Hospital (this would be the worse). The better is that she is talking more and more now, saying things like, “Bye-bye, Children’s Hospital,” and “Thanks, Jasper!” Her enunciation leaves a bit to be desired, but I am sure this is normal for 21 months old. She has also begun saying her name (something like “Ai-eee”), beaming proudly each time. Jasper and Ivy are playing together more and more. Sometimes I’ll hear fits of giggles coming from the other room. This is one of my favorite sounds. Ivy also plays with Jack. She takes his favorite string, and runs gleefully through the house. He is always game and scampers wildly after her. They are good pals.

Oh wow. Just as I was posting this entry onto Caringbridge, I noticed the date at the top. It was exactly one year ago that Ivy's Broviac was placed and that I signed the form allowing chemo to be administered to my baby daughter. And watched tearfully as they shot vinblastine into her for the first time. And cleaned up her very first dose of prednisone, which was projectile vomited across the crib. (Back in those days, Mama and Ivy slept in the hospital crib together; nowadays we know better and ask to have a regular bed, even though we have to sign a waiver saying we know how dangerous it is.)

Ugh. The memories...

Well, I guess that's it for this week…thanks for checking in on us.

Love Allyson, Pete, Jasper and Ivy

Thursday, March 23, 2006 3:45 PM CST

It was Little Girls’ morning in clinic yesterday; each of the four rooms was occupied by a cute girl between the ages of 9 months and 3 years. The other one-year-old was scheduled to have her port removed today and her mother was beaming. I don’t know when this will happen for Ivy, but we will be over the moon when it does!

Anyway, we saw the marvelous Dr. Beach and she was very detailed in checking for side effects from the vinblastine, like neuropathy. So far (knock on wood), Ivy seems to be fine. We talked about starting to taper the TPN and when to schedule Ivy’s next set of scans—these decisions will be made by Dr. T., but he hasn’t been in clinic for a few weeks now. He should be back next week. I don’t know what kinds of scans he will order either, especially since Ivy’s manifestation of LCH isn’t detectable on scans (unless you consider her lungs, but we don’t actually know that she ever had LCH there).

And here’s the big news of the week: Ivy FINALLY reached 20 pounds! She is now 20.46 lbs, to be exact. So now that we’ve reached that goal, I will stop obsessing about her weight, as long as it continues to climb, however slowly. Her appetite is still pretty bad, and I do think it is due to the chemo (foods not tasting right), but they say maybe when they taper the TPN, her appetite will increase to make up for it. We’ll see…

Carol and the girls left on Tuesday. We had a great time with them, taking in many of the touristy things San Francisco has to offer: we had sundaes at Ghirardelli Square, rode the cable cars, took a boat ride under the Golden Gate Bridge, went to Muir Woods and the Exploratorium. We had fun at home too; Taya helped Pete plant strawberries and Jasper and Anya made a fort in the living room. And little Miss Ivy got more attention than she knew what to do with!

So that’s our week…thanks, as always, for checking in (and signing the guestbook--nudge, nudge).

Love Allyson, Pete, Jasper and Ivy

Wednesday, March 15, 2006 7:15 PM CST

It is the Ides of March, but this dark force is counteracted by the fact that it is also Ivy’s 21-month birthday, so we have only good news to report today. Ivy’s appetite has suddenly increased over the last few days and she had a bit of weight gain to show for it. She has now “graduated” to the big kid scale and wall chart for measuring height. No more baby scales for her!

Dr. Feusner reported that he doesn’t hear any more wheezing (which is good because we stopped giving the albuterol a few days ago!). And just to be clear on this wheezing thing, I haven’t been at all worried that the evil LCH has been back in her lungs (if it ever was there in the first place), but Dr. F appears to be relieved that we’ve more or less ruled it out (ie: her wheezing and cough are accompanied by other cold symptoms, no fever, normal activity level). I suppose that’s his job as an oncologist, to investigate every symptom, making sure the primary illness remains in remission, even when the patient’s parents have little doubt.

Our houseguests arrive tonight and it brings back memories of their last annual visit—they were staying at our house and we were having our very first overnight at CHO so Ivy could be prepped for her EGD/colonoscopy. What a miserable night that was! It seems so long ago and we are so happy to be beyond that worrisome, stressful, sleepless time. And poor Ivy, just a wee nine-month-old baby having to be poked to get an IV placed, a tube shoved up her nose to administer the laxative that caused terrible stomach cramps and wet diapers that had to be changed almost hourly, which exacerbated her awful, awful LCH-induced diaper rash. But she was a brave little patient and so I also have memories of her happily admiring the flower murals on the fourth floor of CHO, then later sleeping soundly on my lap in the parents’ lounge where we ended up spending the night (in order to avoid waking our roommate with the constant diaper changing and accompanying wails).

Anyway, what a difference a year makes! We are so, so glad it’s March 2006 and not March 2005!

Thanks for checking in and sharing our mundane, but good news this week.

Love Allyson, Pete, Jasper and Ivy

Thursday, March 9, 2006 1:48 PM CST

We had an uneventful clinic visit yesterday. Ivy’s weight is stable and her wheezing has improved, but is not completely gone, so we will continue to administer albuterol.

And that was really it…

Ivy continues to develop like a normal one-year-old, adding words to her vocabulary almost daily. She’s not so keen on consonants other than B, however, so many of her words sound similar. You just have to take them in context. She just started putting two words together, which I understand is a big milestone. Today, she said, “Bye-bye, truck!” (bye-bye, buh!).

We are getting ready to have our friends, Carol and her daughters, Taya and Anya, visit from Kansas next week. It is turning into an annual event and we are looking forward to it. Every day Jasper says, “How many days until Taya comes?”

(As I write this, Ivy is turning in slow circles, making herself dizzy in the way that kids under eight seem to enjoy…I love watching her be “normal.”)

And that really is it.

Until next time,
Love Allyson, Pete, Jasper and Ivy

Thursday, March 9, 2006 1:48 PM CST

Thursday, March 2, 2006 5:52 PM CST

Well, okay, Ivy’s probably not on the growth charts anymore, seeing as how her weight is back down to what it was two weeks ago. Dr. Torkildson: “Last week’s jump was probably an anomaly, maybe she was wearing more clothing or something.” Dr. Chang: “Well, we need to focus on the big picture, not the little ups and downs.” Of course, they are both right and this is exactly what I would say to someone else whose underweight child couldn’t quite reach 20 lbs, but it is frustrating to say the least. But really, Ivy is not eating. Today she had five pinto beans, three bites of corn muffin, one bite of cheese, two bites of bread, and two ounces of apple juice. She wouldn’t touch her bottle. Again, it could be her cold, it could be chemo nausea, it could be jaw pain from the vinblastine. So thank goodness we have the TPN. At least we know she gets half a day’s calories from that.

Like I’ve said in the past, the TPN is a blessing and a curse. At 3 am Tuesday we woke up to find the bed soaked with blood and TPN. One of the connections on the tubing had come apart. It looked like a lot of blood, but Ivy wasn’t acting like she was about to pass out or anything (in fact, she was furious at having been awakened), so we changed the sheets, hooked her back up and went back to sleep. It is weird and a little unnerving that waking up in a blood-soaked bed is cause for annoyance rather than panic. And it’s a good thing it was our charcoal gray sheets and not our cream-colored ones!

Ivy is back on the albuterol every four hours, because Dr. Chang heard wheezing. It’s annoying and worrisome, but as Dr. T said, “Hey, it’s nice to be dealing with typical pediatric stuff!” I agree, it’s nice, but it’s certainly not fair! Ivy’s already dealing with LCH; shouldn’t she get a reprieve from all those other ailments? But you can’t use the word “fair” in a pediatric oncology clinic. None of it is fair.

Speaking of not fair, our little friend Dillon could use prayers and positive thoughts right now. He was thought to be in remission from hepatoblastoma, but his blood counts are coming back with another story. His parents are experiencing that “punch-in-the-gut” feeling that is all too familiar to me and Pete (and thousands of other histio and cancer families). You can offer your support here: www.caringbridge.org/ca/dillon.

Anyway, despite Ivy’s wheezy cough and runny nose, she was in good form at clinic yesterday. The staff there is really getting to watch her grow up. And she is such a big girl now—she takes Renato’s hand to be escorted into the clinic from the reception area, then sits all by herself while they take her blood pressure and check her temperature. Then she toddles over to be measured and climbs onto the big kids’ scale to be weighed. Everybody comments on how her pigtails are getting longer and longer (despite her hair thinning in the front) and how she is now wearing big-girl shoes, instead of her cute Robeez (though she continues to wear these too). I am so pleased that Ivy is so cared for there at CHO and that the place has good associations for her. It’s not a place of fear and pain for her, THANK GOODNESS!

Thanks to you all for checking in. Even when things are going relatively smoothly, it means a lot to know you’re out there!

Love Allyson, Pete, Jasper and Ivy

Thursday, March 2, 2006 5:52 PM CST

Thursday, February 23, 2006 5:28 PM CST

Well, our little munchkin finally made it onto the growth charts, debuting at the first percentile! (Actually, Ivy spent the first 6 months of her life on the charts, but hasn’t even been close since then.) She’s now 19.8 lbs and has grown 2 inches since December. I guess that prednisone was really stunting her height.

She has a cold with cough, but Dr. T said her lungs sound good, so that’s a relief. Now with even a sniffle, we worry that she will end up back in the hospital.

Ivy and Jasper had their first trip to the snow (that 4-feet-square patch on Mt. Rainier back in 2004 doesn’t count)—check out the photos! Jasper loved it. Ivy seemed very intrigued, but didn’t smile until she was back in the car having her bottle. I’m sure it didn’t help that her snowsuit was too small and her boots were too big.

What else can I add? Jasper and Ivy are at an age where they adore one another. He makes her laugh a lot. It’s fun to watch them crack each other up. While he is a typical big brother and will annoy her on purpose at times (okay, a lot of the time), he is also very sweet with her, soothing her in a high voice, saying, “It’s okay, Ivy, don’t cry,” or What’s wrong, baby girl?” This is when my heart melts. I love watching them interact.

So, all in all, another good week at the Hitt/Schoenberger house…what more could we ask?

Love Allyson, Pete, Jasper and Ivy

Thursday, February 23, 2006 5:28 PM CST

Thursday, February 16, 2006 5:31 PM CST

Wow. I almost forgot to update after this week’s appointment. I guess that means nothing very exciting happened.

Ivy didn’t gain any weight this week, which is disappointing, but not surprising. Her appetite hasn’t been very good for at least a week and a half now. We don’t know why—maybe a cold? Maybe chemo? So much for my goal of 20 lbs by 20 months…

But she is getting taller. For the past four weeks a different person has measured her each time, so I know there’s human error involved, but she IS growing.

We finally got the E for her beads, so one of these days I’ll get motivated and string them!

Ivy and I took BART into the city today to meet some friends for lunch. Ivy was wide-eyed the whole time—you’d think she was a rube who just fell off the turnip truck! On the way home, she played peek-a-boo with some of her fellow passengers and coaxed smiles from the 20-year-old guys listening to their iPods as well as the 70-year-old ladies sitting primly with their pocketbooks. And now after that exhausting adventure, she and Jack are crashed out for their afternoon nap, cuddled up together, hands and paws entertwined. So sweet.

Until next time,
Love Allyson, Pete, Jasper and Ivy

Thursday, February 16, 2006 5:31 PM CST

Thursday, February 9, 2006 5:37 PM CST

Ahhh, a nice uneventful clinic visit—the best kind! Ivy continues to gain weight, but hasn’t reached 20 lbs yet. Her counts are all good, so it seems Dr. T has figured out the “magic” dose of chemo for Ivy.

We came away with another blue bead (clinic visit) and white one (chemo), but we are still lacking the “E” in “Ivy Kate” so I can’t string them yet. What I am hoping is that we collect only blue and white ones from here on out. Oh yeah, plus a glass purple heart which signifies End of Treatment—that can’t come soon enough!

And never mind what I said about not having spring weather. We are having the most glorious warm days, the kind that make you think everything will turn out okay after all.

Here’s to spring!

Love Allyson, Pete, Jasper and Ivy

Thursday, February 9, 2006 5:37 PM CST

Thursday, February 2, 2006 1:13 PM CST

Ivy’s having another good week, something we don’t take for granted anymore and for which we are profoundly thankful.

She is now about 19 lbs, but Dr. T didn’t mention starting to taper the TPN, so I guess he wants her to get above “three standard deviations below the mean.” That’s fine, so do we, but I gotta tell you, this TPN is almost a comedy of errors. What can go wrong, does. And we are pretty sure most of the problems are not due to user error (though at least one was—I won’t mention any names, but it wasn’t me!).

Ivy’s ANC was back up to 1800, so she got her full dose of chemo yesterday. Let’s hope her ANC stays up though; it’s nice to have her not sick for a change.

This week marks the anniversary of Ivy’s first skin biopsy and final diagnosis. We got the diagnosis on February 8th, and met Dr. Torkildson on February 9th. There were about 10 days between the time of the biopsy when the dermatologist mentioned “possible histiocytosis” and when we got the final news. Of course, immediately after hearing that mysterious word from the dermatologist, we raced home and Googled it. We found pictures that looked exactly like Ivy’s rash, read about horrendous diaper rash, which Ivy most definitely had, and saw the words “poor prognosis,” over and over again. We were devastated. And even though at this point we were convinced that this is what our 7-month-old baby had, I continued to search the web for other, less severe diagnoses that could possibly explain the skin rash, the diaper rash, and the bloody diarrhea. That’s called denial, I suppose. Or hope.

So here we are, one year later. It’s been a terrible year, but we are in a much better place than we were last February. We now know that Ivy’s prognosis is probably good, but are still in the dark about what kind of permanent damage her little body is sustaining due to both the disease and treatment. We don’t know how long this journey will be.

Along the way we have met some amazing families, both in real life and across the country through the web. Many LCH families. We share information, good news, devastating news. We offer hope and commiseration to one another. We have donated a lot of money (to us!) to both the Histiocytosis Association of America and our beloved Children’s Hospital Oakland. We know many of you have as well and we are so grateful for that. We will continue to donate, and guess what—we are going to continue to ask you to do the same. It matters A LOT. This horrible disease is drastically underfunded, so kids keep dying (Teresa, Brady, Tucker) and when they are surviving (Ivy, Patrick, Logan, Lindsay, Christopher, Aidan, Christian, Lauren, Alexander, to name just a very few), they are struggling and suffering.

It’s fitting that one year later, a nurse at CHO signed Ivy up for the Beads of Courage program. It’s a program for oncology kids, whereby for each clinic visit, transfusion, chemo, hospital stay, scan, etc., the kids earn a color-coded bead (red for transfusion, magenta for ER visit, blue for clinic visit, etc). So Ivy was presented with her beads yesterday and she already has 120 beads (including 58 blue ones for clinic visits in one year!!!). Last week there was an article in the San Francisco Chronicle about the program; here’s the link:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/01/24/BAGD1GS5K41.DTL&hw=beads+of+courage&sn=001&sc=1000

If the link doesn't work, you can go to www.sfgate.com and search for "Beads of Courage." You will read about Phillippa Doyle in the story, Nurse Extraordinaire. We love her and her lilting Irish accent! Anyway, I will string the beads and take a photo soon. It’s a really neat idea and I’m thrilled that Ivy is included!

I guess that’s all the news from here. Happy Groundhog Day! We are having rain, so I guess that means spring is right around the corner, eh? The magnolias, cherries, daffodils, and narcissus are in full bloom, but our weather has been anything but spring-like. But that’s okay! As long as Ivy continues to do so well, we can tolerate any kind of weather!

Until next time…
Love Allyson, Pete, Jasper and Ivy

Thursday, February 2, 2006 1:13 PM CST

Friday, January 27, 2006 7:00 PM CST

I feel like screaming it from the rooftops, but publishing it on the web is as close as I’ll come to that: Ivy’s scan was CLEAR!!!

Dr. Torkildson called me at work with the news, just late enough that I had managed to convince myself that it was bad news and that he needed time to formulate a plan. What I said to him, something along the lines of, “Oh, I’m so relieved. Thank you” hardly conveys the emotion, but I suppose he is used to all manner of responses from overjoyed parents (do any of them ever say, “Dr. T, I love you!” or start whooping and hollering? Well, I bet some do. I bet he’s heard it all).

This is a wonderful start to the weekend!

Ivy’s TPN pump has been acting up. I swear, we must be the family with the most calls in to the on-call nurse in the shortest period of time. Last night, blood started backing up into the line, so she did not get her TPN. Starting after we had solved the problem would have meant she wouldn’t have finished until 10 am, and since both Pete and I had to be at work, we decided to skip it. We hate depriving her of the calories, but Ivy slept better than she has in weeks! Like the Broviac, this TPN is a mixed blessing.

Anyway, now you can all sigh with relief and enjoy your weekends. We will! Thanks for all the prayers, positive thoughts, good vibes, crossed fingers and whatever else you offered up for Ivy. They seem to have worked this time!

Love Allyson, Pete, Jasper and Ivy

Wednesday, January 25, 2006 7:18 PM CST

Ivy had another good clinic appointment this week. She gained a half pound, bringing her to about 18.5. She jumped from 70 to 72 centimeters in one week, but I’m sure a good part of that was due to the fact that it was not the regular person doing the measuring. Ivy is looking a wee bit taller though. According to Dr. T, she is “three standard deviations below the mean” in both height and weight, so he’s not wanting to taper the TPN just yet. I never took a statistics course, so all this means to me is that she’s tiny! We know this, of course. I told Dr. T that Ivy at 19 months old is the size of a 12-month-old. He whipped out his calculator and after punching several keys agreed that she is the size of a PETITE 12-month-old.

Ivy’s CT scan is set for tomorrow at 1 pm, despite her runny nose. Dr. T said as long as she’s not coughing the anesthesiologist will not object. I hope he’s right, because she is NPO after midnight and I would hate for that to be all for naught (for those of you that haven’t attended nursing school or spent any time on the oncology floor, this means nil per os, or nothing by mouth). The TPN is helpful in this regard though; it seems to keep Ivy feeling a little bit full. This is one reason that they administer it at night—to keep kids eating normal food during the day. So anyway, please, please keep Ivy in your prayers and thoughts—we want a clear scan tomorrow! And obviously we want no complications from the anesthesia. This will be the seventh time (I think) that she’s been put under and it’s never been a problem, but still…

It’s been a very sad couple of weeks for the families of two LCH children we know of. Both Brady (www.caringbridge.org/visit/bradystewart) and Tucker (www.caringbridge.org/visit/tuckeranderson) passed away, both from complications of bone marrow transplants. So please add their families to your prayers as well. I’m sure they need all they can get right now. Tucker had a big sister, maybe Jasper’s age, maybe a little older, and this is what is breaking my heart the most—how on earth were they able to tell her that her baby brother passed away?

Also, please know that it is highly unlikely that Ivy would ever require a BMT for her LCH. It is really and truly a last resort. We’ve been lucky that she has responded well to MUCH milder treatments. And as Dr. T pointed out last week, Ivy is farther into maintenance this time around than the first time. In fact last time her first symptom reappeared after less than two weeks on maintenance; this time it’s been well over a month.

I will update when we get the results from the scan—before the weekend, I hope!

Love Allyson, Pete, Jasper and Ivy

Thursday, January 19, 2006 4:53 PM CST

We had a good appointment with Dr. T yesterday (despite the fact that we were there for FOUR hours—the pharmacy took that long to get Ivy’s chemo ready). Ivy is back to her all-time high of 8.2 kilos or 18 lbs. Dr. T says if she gains another pound by next week, we will start to taper the TPN. This will be WONDERFUL! It is such a pain to deal with.

He also said we can discontinue the albuterol, but to keep on giving her the Flovent. This whole asthma thing boggles my mind—I can’t seem to get my head around it. Does she have asthma or doesn’t she? Will she need meds forever or not? Do these meds help if you don’t have asthma? Is her tachypnea related to asthma? What about this reactive airway disease that’s been mentioned a couple times? Actually Dr. T cleared that up—there is a very fine distinction between RAD and asthma if any at all. Some time ago, doctors started diagnosing RAD instead of asthma because insurance companies wouldn’t cover people diagnosed with asthma. Pure evil, I tell you! Who needs medical insurance if not the sick?!

Even though we think Ivy's tachypnea is gone, we are going ahead with the high-res CT scan next week. Dr. T wants to make sure there’s nothing there. I’m pretty sure they won’t find anything, but I’ve been wrong before.

Dr. T also cut her chemo meds by quite a bit, because he wasn’t happy with the way her blood counts were responding. Her ANC was 759, barely high enough to get chemo in the first place. Her hemoglobin was 9 something, which is right where it should be after a transfusion and chemo a couple days before that. So anyway, he cut the vinblastine by about half, and the methotrexate by 2/3, I think.

By the way, for the record, the two spots on Ivy’s belly disappeared, but I think I see one in her diaper area today. LCH? I don’t know. Is it okay for these spots to come and go if they are LCH? I don’t know. As long as they don’t multiply, and as long as there’s no diarrhea, I won’t panic.

Ivy has a little cold also, just a runny nose. Pete may have it as well. We have to stay on top of it, though—we can’t let her wind up back in the hospital!

That’s all for now. I must get busy in the kitchen; I’m feeling ambitious so we’ll be having potato-leek soup for dinner! Also, after Ivy wakes up, we’ll be going to pick up Jack at the vet. The poor guy lost his manhood today.

Thanks for checking in, as always.

Love Allyson, Pete, Jasper and Ivy

Thursday, January 12, 2006 5:52 PM CST

--UPDATE--

Ivy's hemoglobin got down to 6.6, so she had her very first transfusion last night. It went well, with no adverse reactions, but it is creepy watching someone else's blood drip into your baby's veins!

Wooohooo! Finally, a clinic appointment where they didn’t send us directly across the street for admission!

Nonetheless, it was an unusual visit—long, complicated, and in the Day Hospital, which has never happened before. We knew that Ivy’s hemoglobin was dropping and getting dangerously close to transfusion level, so that’s why they put us there (a transfusion takes about four hours, so you actually get a bed and a TV and they bring you meals). Even though her hemoglobin was 7.1 today, Dr. Feusner opted to avoid a transfusion and have us recheck her levels on Saturday. So we will do that.

The other complicating factor was Ivy’s mother (yes, I mean me). This morning I found two spots on Ivy’s belly which, as I told Dr. Feusner, “I would put money down that they are LCH.” Well, he didn’t think they looked like LCH, but said we should withhold chemo to see if it got worse, in which case he might agree that it is LCH. The thing is, these spots look exactly like her very first LCH spots that appeared in September 2004. But the other thing is, we have seen similar spots over the past several months and they do go away without turning into full-blown LCH.

So Dr. F checked with Dr. T, who agreed that withholding chemo made sense for now. Why subject her to toxic drugs when they may not even be working? But then I called Pete, who was the voice of dissent. He was very unsettled about skipping it, and reminded me of the spots we’ve seen that may or may not have been LCH. So I talked to Dr. F again, who said I should talk to Dr. T and he would send him on over from the main hospital.

Still with me? Anyway, Ivy was all grins for Dr. T and he was very pleased by that, saying, “I haven’t seen your smile in a month!” And in the two minute walk across the street, Dr. T had revised his opinion and decided Ivy should get her chemo after all. I can’t exactly re-create his reasoning, but it had something to do with the three-day weekend coming up. And it made sense to me at the time.

Well, we already know that medicine is just as much art as science and also that there is no road map for LCH; I am also learning that there appears to be a code among doctors in the same practice—always back one another up. And I’m learning that doctors can change their minds as often as they like, as long as they can support their new decision as well as they supported their completely opposite original one.

Pete is happy that Ivy got her chemo, but since both sides of the argument made sense to me, I am on the fence. They have lowered her vinblastine dose, however, trying to keep her from being neutropenic (not sure if this is a permanent reduction, or just temporary).

Overall, Ivy is much, much better. Her cough is pretty much completely gone (maybe one or two coughs a day) and she is eating, laughing, smiling, playing with her new Christmas presents and totally delighting in Jack (they are napping together right now). We will continue with the asthma treatments, at least until Ivy goes to clinic next week. We are also continuing the TPN, at least for a couple weeks more. Her weight is steadily climbing again and today she was at 17.4 lbs (but still down from a high of 18 ).

Her tachypnea (the medical term for her fast and shallow breathing) hasn’t completely gone away, so I think they still want her to have the CT on the 26th.

I am a bit overwhelmed by today’s appointment, still trying to process everything. I am an underqualified manager of a complicated medical case. It’s a steep learning curve and some days I do better than others.

By the way, I see that our visitor count on this webpage is over 10,000!!! That calculates to over 1,000 hits per month, which means either that there a few very obsessive individuals checking in on Ivy, or that there are a lot of caring people who continue to monitor her progress. I’m sure it’s the second option. (this is where I would insert a smiley, but Caringbridge doesn't allow that)

Fingers crossed that she won’t need a transfusion on Saturday, okay? Thanks!

Love Allyson, Pete, Jasper and Ivy

Saturday, January 7, 2006 0:29 AM CST

Whew! We are home. What a relief.

Ivy looks and acts better each day, though her breathing is still bad. She threw up a few times last night after I left the hospital, but we are hoping that was due to chemo nausea, since they did go ahead with chemo after all.

The only outstanding test results are for TB and that’s a long shot. We have to go in Sunday for a nurse to “read” the test—to see if the poke they gave her in her arm turns red. Or something like that.

Our clinic appointment will be Thursday instead of the usual Wednesday, so I’m hoping there will be no news until then!

And for your viewing pleasure (at least I hope so!), I’ve uploaded a few new photos.

Love Allyson, Pete, Jasper and Ivy

Thursday, January 5, 2006 11:56 PM CST

I have jinxed things yet AGAIN—our good room karma is no more. Tonight around 7:15 a nurse barged in saying, “Bad news, we have to move you to a different room. We have a neutropenic patient coming in who needs the isolation room.” So poor Pete is there again with Ivy, but this time with the added stress of a roommate (but he did go to work today, while I stayed at the hospital). But the good news is that Ivy will almost definitely be released tomorrow, so everyone will be back in their own beds soon enough.

The RSV and influenza tests came back negative (no surprise there) and we haven’t yet heard about the pertussis, but I don’t think anyone is expecting a positive there either. They are also doing a TB test on Ivy, but again, we’re not expecting a positive for that either. She has been semi-officially diagnosed with VIRAL pneumonia, but despite that they started a five-day course of zithromycin (antibiotic) as a just-in-case measure.

They’ve continued with the aggressive asthma treatments, but even though she is improved, she continues to breathe rapidly and shallowly. It’s a symptom that isn’t easily explained. Ivy will have a high-resolution CT scan on January 26 to see what’s going on in her lungs. We have to wait for the infection to clear up to get a good reading.

So that’s all the news from here…(I’m having a hard time typing as Jack is sprawled on my lap and using my right forearm as a pillow—must sign off).

Thanks for all the wonderful messages in the guestbook!

Love Allyson, Pete, Jasper and Ivy

Thursday, January 5, 2006 0:28 AM CST

It seems I’ve really and truly jinxed it now—Ivy’s back in the hospital. We went to our regular clinic appointment this morning and the docs were alarmed by her breathing, which is rapid, shallow, sometimes wheezy, and accompanied by a horrible cough. So she’s back in 5323 (how long can our good room karma last?!) and was seen by three oncologists, one pulmonologist, and a handful of residents. During the four+ hours we were in clinic she had three albuterol treatments which seemed to help, so they are now aggressively treating her with asthma drugs (though they are still pondering other possibilities, like LCH).

They gave her another xray (that’s three times in 11 days), which showed that her lungs were the same as, or slightly worse, than on Thursday. They think it looks viral, but they can’t be sure. They tested for RSV and influenza (AGAIN!), as well as pertussis. No results yet. It would be nice to get a positive on one of these, I think, because it would point us away from LCH.

Ivy ate A LOT today, but then threw it all up this evening, after a coughing fit. But it’s good that her appetite is back. Her mood is improving too.

They didn’t give her her chemo today, even though her counts are good. They said they wouldn’t do it with her lungs in such bad shape (though Dr. T isn’t in this week, and he seems to be in favor of aggressive LCH treatment with Ivy, so I wonder if he would have a different opinion).

I’m home tonight with Jasper and Pete is staying with Ivy, since I was there all day (with the help of Grammie!). There was talk of a possible release tomorrow, but I won’t be surprised if that doesn’t happen.

Anyway, I must sleep. The silver lining is that I won’t be awakened by the darn TPN alarm going off—3 out of 5 nights it has!

I will update when I can…

Love Allyson, Pete, Jasper and Ivy

Tuesday, January 3, 2006 0:04 AM CST

I don’t want to jinx anything by saying this, but Ivy appears to be on the mend! She hasn’t thrown up since Friday night and she’s had two “peanut-buttery” poops (sorry, but this is how Dr. T described a healthy-looking stool). Ivy’s eating too. I have no idea what a normal appetite is for an 18-month-old, seeing as how this one has either been on prednisone or terribly ill, but she is vastly improved from a week ago. Her attitude is much better too—she’s even played independently for a few moments here and there.

Her cough is still bad, but the nebulizer does seem to help a bit. Every morning between 5 and 6 am she has a coughing fit that will not let up unless she gets her treatment. So between that and the TPN alarm going off every once in awhile, we aren’t getting the best sleep.

Yes, so far the TPN has been a bit of a pain, to say the least. Two out of three nights we have been awakened from a sound sleep by the alarm alerting us to a different problem each time. So we call the on-call nurse, who seems a bit put out about being woken up (though I know she earns $15 for each call). One problem she was able to solve, but not the other. We just had to turn it off, so Ivy had to forgo four hours’ worth of lipids. Pete just hooked Ivy up for the night, so let’s hope tonight goes smoothly!

We had a fun New Year’s Eve with our friends Adria and Leo and all of us, including the wee ones, stayed up past midnight (!!!). For the Hitt/Schoenberger household, 2006 has been a huge improvement over the last weeks of 2005! So Happy New Year to you all!

Oh yes, one last thing: thank you all for the great messages in the guestbook--they really do brighten our day.

Love Allyson, Pete, Jasper and Ivy

Saturday, December 31, 2005 0:17 AM CST

It is my opinion, and of course, I’m right, that Ivy is not the least bit improved since her little “tune-up.” We were released from CHO yesterday after a few more tests. They did another chest xray and found something that looked like a cold virus, which was not there Saturday. Of course, I could tell she had a new cold by her runny nose and looser-sounding cough. They did a test of her nasal secretions (this is my word choice—the resident used the word “booger” and she must have said it at least ten times while explaining the procedure and then doing it) to see if she had RSV or influenza (both were negative).

I’m getting the impression that Dr. T is not sold on the asthma theory and is looking for other culprits for the ongoing cough. We are continuing the breathing treatments here at home, but they seem to be only marginally helpful. Of course her new cold is responsible for her cough NOW, but that doesn’t explain why she’s had it for months previously.

The other MAJOR change in our life is that now Ivy is getting TPN at home (I just hooked her up for the first time half an hour ago). The nurse came by this afternoon and spent two hours training us. Pete and I feel very overwhelmed. The amount of equipment is stunning and the many little steps to set it up correctly are tedious. The nurse will be coming by tomorrow to help us again, but after that we are on our own. She assures us that soon it will be old-hat, just like caring for the Broviac is (and that too, was overwhelming and intimidating at first).

It’s a good thing I didn’t update last night, because I was feeling mighty sorry for myself. I was tired of cleaning up vomit and diarrhea, tired of managing medical supplies in my dining room which is no longer a dining room, tired of holding a fussy baby for three weeks straight and on and on and on. I am still tired of all of those things, but my head is in a better space right now.

And yes, Ivy is still throwing up and she still has diarrhea. It’s frightening, but we have our fingers crossed that it’s just an especially aggressive rotavirus on an especially compromised baby (though as of yesterday, she is no longer neutropenic). I was told today that the rotavirus could last 4-6 weeks. Ugh.

So that’s where we are…

Some of you have asked about Jack…he is adjusting to his new family, even though we are in the midst of chaos. True to his Burmese nature, he cannot get enough affection. He will throw himself upon our feet if we stand still for too long, demanding a belly rub. He will head-butt us and gently pat our faces with his paws and purr and purr and purr. Jack’s still wary of the 1- and 4-year-olds in the house, but I think he’ll soon figure out that despite their loud ways and erratic behavior, they mean him no harm and would really like to play with him. By the way, he came to us with the horrid name of Jaccard (my apologies if any of YOU have that name), so to us he is Jack. It suits him.

And here it is the second to last day of 2005. I am so happy to put this year behind us!!! It was truly the crappiest year of my life and Pete’s too, I’m pretty sure. So happy new year to all of you…It was one year ago that Ivy was already quite sick, but we did not have a diagnosis for another month. It was eight years ago that Pete and I met at a New Year’s Eve party (and the rest is history, as they say!). Anyway, we wish all of you a much, much better 2006: first and foremost, a year of HAPPINESS and HEALTH. We could not have survived this year without your love and support.

Love Allyson, Pete, Jasper and Ivy

Wednesday, December 28, 2005 3:20 PM CST

Ivy was admitted into CHO yesterday. We knew it was coming!

We took her into clinic, where Dr. Beach examined her and reviewed the facts of the ER visit on Christmas Eve. She then consulted with Dr. T, who was on the inpatient rotation and he said there were too many little things going on with our girl, so better to admit her and "give her a little tune-up."

Ivy DOES have rotavirus, which I think is good news, because it explains the diarrhea, vomiting and loss of appetite. Unfortunately, there's nothing to be done about it, other than keeping her hydrated. That's one reason for admitting her. We also found out that her cortisol levels came back slightly high, rather than low, so we know that her adrenal gland is NOT at the root of her problems.

They are giving her albuterol and an inhaled steroid for her coughing. It seems to help-- the cough sounds a little looser and more productive. We don't know if she has asthma, but these drugs may become part of her life for awhile.

They are also concerned about her weight loss, so she is now getting TPN, which stands for Total Parenteral Nutrition, basically a mixture of fluids, electrolytes, and calories. Dr. T says that about a third of the chemo kids end up on it, because they stop eating. So Ivy will be getting it 12 hours every night through her Broviac for a couple months at least. It will provide about half of her calorie needs; the rest she needs to actually eat.

She also continues to be neutropenic, which in combination with the rotavirus, is a blessing in disguise! It means we get our own room! So we are in 5323, the same room we had on our last visit, when Ivy was getting 2-CDA. The bad part is that she's not allowed to leave the room, so we are getting a little stir-crazy. Right now I am down in the Family Resource Center, which is a wonderful getaway!

Overall, Ivy is doing okay. She is still cranky as ever, and not walking, but she ate some oatmeal this morning and laughed a little bit at her new Sesame Street toy.

We will probably be released tomorrow, once they have got the TPN "recipe" right. It's different for every kid. Then it will be delivered to our home every day or every other day. This will be a whole new part of the chemo experience for us. Not looking forward to it, but if it helps Ivy grow, it's definitely worth it.

So here we are at CHO. But at least it's not Christmas and at least Ivy is stable. Whew. Our nurse today shared her own sad story with us: she lost a son to a brain tumor when he was 13. That's why she became an oncology nurse. It's very sobering. We still have our Ivy and we still think she's going to make it, even though getting there may be a huge struggle.

Thanks for checking in. Keep your fingers crossed that we go home tomorrow and that Ivy keeps getting better!

love Allyson, Pete, Jasper and Ivy

Monday, December 26, 2005 2:29 AM CST

It is late on Christmas night, but I didn’t want to leave such a pathetic post up on the front page, so here I am. I will do my best to summarize our (crazy) Christmas Eve, at least in terms of Ivy and her condition.

After letting her sleep in yesterday, we took her to the hospital, arriving around noon. Because it was the weekend she had to be seen in the ER. In the seven hours we were there she was examined by many doctors and we learned about several possibilities that could be causing Ivy’s malaise. We came in complaining about diarrhea and vomiting and ended up dealing with lung issues—they ordered two different breathing treatments and a chest x-ray, which came back clear, ruling out pneumonia. The breathing treatments helped her mild wheezing, so the idea of asthma was tossed around (though keep in mind every single time she’s been examined in clinic her lungs have sounded clear to several different doctors). But there is a family history and asthma is not uncommon anyway, so it’s a definite possibility.

We also learned she was neutropenic (ANC in the 200’s), but that was not a huge surprise, being on this new chemo drug.

She didn’t throw up the entire time we were there and even drank 1.5 ounces of milk (of course in seven hours that’s nothing). However, at Aunt Beth’s house, during our Christmas Eve “celebration,” which was actually just a quick visit after we returned from CHO and they returned from church, she did throw up. And this was while she on Zofran. Again this morning, only an hour after a Zofran dose, she threw up again, so we have now ruled out nausea. We are still considering gagging on phlegm and of course, LCH, as the cause of her daily vomiting.

At the end of our visit, the on-call oncologist came down. It was Dr. Singer, who was in charge the night Ivy had her Broviac placed and received her very first chemo treatment on March 30—she is a no-nonsense doctor with a German accent (I think) and I have a lot of trust in her, though she hasn’t seen Ivy since that very first time. Anyway, Dr. Singer suggested that perhaps Ivy’s adrenal gland hadn’t kicked back in during the prednisone taper and this could be causing many of her symptoms, including lack of appetite and lethargy. So they did a blood test checking for cortisol levels, but we have not yet gotten the results (30 hours later!). Then she mentioned rotovirus which could cause diarrhea and vomiting, so today we brought in a stool sample to the lab. No results there either.

Dr. Singer made it very clear that Ivy could be admitted, but that she understood if we didn’t want to do that, it being Christmas Eve. So that is still something we are considering, much as we dread it. They would give her fluids and maybe some kind of IV nutrition, but we still wouldn’t be getting to the bottom of her problems, so our decision depends on how acute her situation gets. As it is, she is not dehydrated and a couple of different doctors congratulated us on getting fluids into her (Pete gives her syringes of milk a few times a day).

As I’m typing this Ivy is having a coughing fit, which is typically a prelude to vomiting, so I’m tense. I may be cleaning up puke before I get to posting this.

So anyway, we still know nothing. Ivy is still droopy, barely eating and throwing up (the diarrhea has improved a bit). But all things considered, our Christmas turned out pretty good. Pete left me alone with Ivy in the ER yesterday for a couple hours on an errand to get a Christmas surprise for me, which turned out to be Jack, a gorgeous 10-month-old red Burmese cat. (!) I’m thrilled, but poor Jack is depressed, being apart from his cat family for the first time. I keep telling him what a great cat mom I am and how much he will love living with us, but he’s not getting it yet. He will. We are so excited to have a cat in our house once again!

Okay, Ivy hasn’t puked yet, so I am going to post this now. Merry Christmas to all!

Love Allyson, Pete, Jasper and Ivy

Saturday, December 24, 2005 0:23 AM CST

Thursday was bad, Thursday night was bad. Very little sleep was had by the parents in this house. Today I went to work, but Pete reported that today was much like yesterday for Ivy: no eating, much lethargy, some vomiting, some diarrhea. On Tuesday and Wednesday I was starting to feel confident that Ivy’s symptoms were a virus, but now I am just as confident that it is LCH showing itself in both her upper and lower GI tract.

Tonight we went to Thompson Street in Alameda to see the Christmas lights, then to Trader Joe’s. Ivy perked up in TJ’s, and even ate three bites of the pecan pie they were sampling and some of the turkey. But then on the way home it all came back up. She doesn’t even cry about it anymore, because she is getting so used to it. She is eating very little (yesterday: 3 ounces of milk, one bite of cookie) and most of it reappears as vomit or diarrhea. Her body must be starving.

Getting more and more worried and following Dr. Beach’s advice—“trust your mother’s instinct and if you think she’s worse, call us!”-- I called the oncologist on call, Dr. K, who said that we can bring Ivy in tomorrow morning. Morning can’t come fast enough—I want more answers from the docs. I want Ivy to stop suffering. I want to know what’s going on, but I’m sure this won’t be determined by tomorrow. My fear is that they will want to admit her for dehydration and malnutrition and we will wake up on Christmas morning at Children’s Hospital. My heart breaks when I think of this scenario. Poor Jasper. He is beyond excited and I can’t stand the thought of not being with him on Christmas morning.

So that’s our sad and worrisome little update on the eve of Christmas Eve. It’s funny (not really), but tonight walking along Thompson Street, our little family received so many smiles. I’m sure they see a nice family of four, a tall dad, a petite mom, a curly-headed boy and a wide-eyed baby, but they have no idea how heavy this burden is, how even when we are smiling and oohing and aahing over the various light arrangements of Santa and Rudolph, we have a gnawing anxious feeling in our stomachs that just won’t go away.

Sorry to be such a downer at the most festive time of year…but it is what it is.

Love Allyson, Pete, Jasper and Ivy

Thursday, December 22, 2005 11:13 AM CST

Ivy is still very sick. She has fluctuated quite a bit since the last time I posted, sometimes to the point of eating, smiling, and playing, but for the most part she is very droopy and refusing to eat.

Dr. Beach, who is just an amazing doctor, maybe the best oncologist at Children’s, reviewed all of Ivy’s symptoms and says it is a virus and we just have to let it run its course. I’m sure she sees much, much sicker children on a regular basis, but when we compare this Ivy to the regular Ivy, it’s hard to see her so miserable.

She had a fever of 100.6 on Sunday night, but not before or since. She has thrown up, but we are pretty convinced she is gagging on mucous. Her stools started appearing very normal, but then she had diarrhea last night. That may have been from the chemo, though.

Her ANC is quite low, to the level where they usually halve the chemo dose, but the docs seem to feel strongly about being aggressive and gave her the full dose yesterday. Can’t argue with that—I’d rather be worried about fighting germs than fighting LCH.

We are driving a rental car this week, because we finally got around to taking our trusty Honda in for body work (this poor little car has the worst luck—on two separate occasions when it was PARKED someone backed into it, causing some pretty extensive dents). Anyway, when Pete installed the carseats in the rental, he put Ivy’s forward facing, so she is finally getting to experience the world as it comes, rather than as it passes. Of course, she lost weight this week (down to 17.1 lbs), so she’s getting further from 20 lbs, rather than closer, but I don’t think we’ll be able to make her face backward ever again!

Well, sorry this isn’t the cheeriest Christmas update…we are just hoping Ivy improves enough to enjoy Christmas a little bit. Speaking of Christmas, Jasper and Ivy received more presents yesterday at the hospital, leftovers from the party, I guess. It’s pretty nice to go see the doctor and come away with gifts!

In case I don’t update soon, we wish you all a very merry, joyous Christmas and a wonderful, warm Hanukkah. Thank you all so much for thinking of our Ivy—here’s hoping she’s on the mend soon!

Love Allyson, Pete, Jasper and Ivy

Sunday, December 18, 2005 0:43 AM CST

Ivy is sick, sick, sick. And we are worried, worried, worried. She’s barely eating, very clingy, and whiny. She is still kind of throwing up—four or five times on Thursday, but today only once. We still can’t tell if she’s gagging on mucous or if it’s nausea. Her stools have gotten a little more normal looking, so we high-fived after changing her diaper this morning (okay, not exactly, but we did hoot and squeal). But still, we hate not knowing what is wrong with her. In a way it reminds me of how she was pretty much the whole month of October, suffering from general malaise. And then it went away and she was our fun, happy little Ivy again. It could be that with her lowered immune system she just can’t fight this stuff off and it takes weeks to beat a virus. Or it could be…I won’t even say it. Our fingers are crossed that it’s NOT that.

She is funny though. I offered her Tylenol (technically we’re not supposed to give it to her, because it can “mask” a fever, which could be serious, but we always check for fever before giving it). She shook her head no, but we squirted it into her mouth anyway. Big mistake. This prompted a gagging fit, which led to a vomiting episode. But then, later, I pulled out the prednisone bottle and offered her that. I pretended to put prednisone in the syringe and she opened her mouth just like a baby bird. What kind of crazy kid prefers prednisone (I’ve heard it tastes horrible) to Tylenol? My steroid-addicted kid, that’s who. We are even wondering if Ivy was benefiting from the placebo effect, because she perked right up after that. So far, that bait-and-switch has worked four times.

She is always adding new words to her vocabulary and her newest is “Santa.” To the unsophisticated ear it might sound like she’s saying “Dada,” (her all-time favorite word), but really it’s more like “Danta.” And of course she only says it when seeing a picture of the man in red. Very cute! I hope she’s well enough to enjoy her second Christmas.

Jasper is SO excited this year. It’s the first year that he’s enjoyed decorating the tree and been filled with anticipation about the presents under it. He says, “Mama, I really don’t think I can wait. I just can’t.” But he will and he will be glad he did! We are all excited this year. It just gets more and more fun with kiddos, doesn’t it?

Thanks to those who signed the guestbook. It’s nice to know you’ve been here. Maybe next time you check in, I will have better news about Ivy!

Love Allyson, Pete, Jasper and Ivy

Thursday, December 15, 2005 11:04 AM CST

Ivy is 18 months old today! We officially have a 1 ½ year old toddling around.

Yesterday her maintenance protocol began. Her first dose of methotrexate went smoothly. They gave her Zofran with it, so I guess they expect to see a little nausea with this drug. I asked Dr. T what other side effects we should be on the lookout for and he said it’s unlikely she’ll have any at this dose (!?). I hope he’s right!

Ivy’s gastrointestinal symptoms slowly improved from Sunday to Tuesday, enough so that we were sighing with relief, but then Tuesday night she threw up again. Dr. T’s opinion is that it’s a bug, since the vomiting and diarrhea appeared at the same time. She also has some spots on her face, which he says appear to be “non-specific viral rash.” Again, I hope he’s right!

Early this morning she had another near-vomiting episode, but it was more like retching. Nothing came up. Sometimes we think she’s gagging on mucous, but we just can’t be sure. It’s very frustrating and more than a little nerve-wracking.

We went to the holiday party at CHO (see photos!) and it was absolutely wonderful. It was very crowded—I found out yesterday that over 400 people RSVP’d (and this was only for the oncology patients’ families—sickle cell and thalassemia get their own parties!). The Cal basketball team was there signing autographs, which some attendees seemed to find thrilling (not us, though!). The line for Santa was long, but moved quickly. Jasper and Ivy were both brave enough to sit on his lap, but Jasper had the same look on his face that he had at the dentist, very somber and slightly anxious. Ivy gazed up at Santa, but before I could take a photo, she was flinging herself back into Daddy’s arms. Every single child received a gift-wrapped toy and they were very cool toys! I was so hoping they wouldn’t be handing out boring old stuffed animals—I was pleasantly surprised. Jasper received a Rescue Heroes toy and completely loves it. He took it to school yesterday to show everyone. Ivy got a Little People Nativity Set. She is less enamored of that, but she’s been grumpy lately anyway.

There was a gospel choir there and of course, food. We chatted with a couple families we know from clinic and everyone had a wonderful time. We love Children’s Hospital!

Ivy, who is a major cat-lover like her Mama, has finally learned how to meow. She sounds more like a cat in heat—“rrrrroooooooowwww,” but it is very cute. Her meow is always accompanied by a pleased grin.

We have a very busy day ahead of us, so I must be off. Remember to check out the party photos and please sign the guestbook! We know people are checking in, but we don’t know who!

Thank you for caring about Ivy and about us. It means a lot!

Love Allyson, Pete, Jasper and Ivy

Monday, December 12, 2005 0:24 AM CST

Ivy is under the weather this weekend. I’m sad to say she’s had a bit of diarrhea and two puking episodes. Her appetite is somewhat diminished (though we attended two birthday parties today and she insisted on eating birthday cake at both). We are trying not to get too alarmed yet; it could be any number of normal toddler ailments. So for now we watch and wait, but I just wish she could tell us exactly how she was feeling. Then we might have a better idea of what we’re dealing with—evil LCH? Tummy bug? Something else?

Today was her very last prednisone dose and while a part of me wants to dump the rest of the bottle down her throat to keep her “healthy,” I am also relieved that we are at the end of that era. I look forward to seeing Ivy’s normal appearance, rather than this chunky little sumo wrestler who calls me Mama. Of course, her hair will continue to thin, so we still don’t get to see the “real” Ivy, the one we would have had had we never heard of this disease.

Please send us a few good vibes this week, that Ivy’s symptoms stay away. Also please send prayers and positive thoughts to the family of Sriya. She was a three-year-old who lost her battle to cancer the day before Thanksgiving. I was honored to attend her Celebration of Life yesterday. Sriya’s suffering is over, but now her parents suffer greatly, as you might imagine. I think about them all the time.

Stay tuned…

Love Allyson, Pete, Jasper and Ivy

Wednesday, December 7, 2005 11:03 PM CST

We’ve got a plan: Ivy will continue to receive weekly vinblastine, coupled with weekly IV methotrexate. No prednisone at all, once we are finished with the taper, which will be Sunday. Dr. T is concerned about her having had such high doses of steroids for so long, so even if she relapses, she won’t go back on it.

Assuming she remains in remission (which is what we are calling it), this plan will continue for six months; then she will receive vbl/mtx every two weeks for an additional six months. So we are looking at another full year of chemotherapy, and that’s IF she doesn’t relapse. This is okay by me, as long as it works!

If she does relapse, which will not surprise anyone, Dr. T thinks cyclosporine is a good choice for Ivy. It is an immunosuppressive drug, like prednisone, to which Ivy seems to respond well. Of course, we don’t really know if she responds well to vinblastine or prednisone, or if it’s the combination of the two. We will soon find out.

Ivy gained almost a half pound in the past week, even with the prednisone taper, so that’s good news! Maybe she will reach 20 lbs by 20 months.

Jasper’s birthday was wonderful, but can I just say I’m glad it’s over? Thank goodness it only happens once a year, because it took a lot out of me! Thank you to Nana, Gramma, Becky and Ben, Carol, Taya and Anya, and the Roots and Uncle Mike for sending birthday packages. Jasper was thrilled to come home three days in a row to new packages on the porch! His dinosaur party at the Y was fun too—check out the photos I uploaded.

We have a tradition at our house—we don’t do anything Christmas-y until after Jasper’s birthday, so that his birthday remains special. But now Christmas begins, ay ay ay! Children’s Hospital is having a holiday party for the oncology patients and their siblings next Tuesday. Santa will be there, with gifts! I am just so touched by this. Not only do they offer topnotch care to these sick kids and treat each child like they’re the favorite patient, but they throw parties and give presents! Wow! I am greatly looking forward to it.

Anyway, if you don’t mind (and I assume you don’t since you are checking this page!), now would be a good time to offer prayers, positive thoughts, well-wishes, and crossed fingers that Ivy REMAINS IN REMISSION. (Though I hesitate to call it that since we can’t say for sure. But at any rate, she remains symptom-free.) Thank you all!

Love Allyson, Pete, Jasper and Ivy

Thursday, December 1, 2005 1:00 PM CST

There’s not much to update this week—yesterday Ivy had her next-to-last dose of weekly vinblastine, but alas, once again, Dr. T was not in clinic. So we still don’t know what maintenance will be like.

Ivy’s counts are excellent, which convinces me that it must be the prednisone and not the vinblastine that knocks them down. She’s fighting a cold and has very little appetite today. In fact, it is about 10:30 am and she’s had nothing since a 5-oz bottle around 6:30 am. Jasper has a brutal cold this week too, with a very croupy cough and no appetite as well. He hasn’t been in school all week.

Ivy is now 18 lbs, almost exactly (woo hoo!). My fingers are crossed that she makes 20 lbs by 20 months, but without the megadoses of prednisone to boost her appetite, it’s a long shot. I suppose that’s the least of my worries though. My fingers are REALLY crossed that we have knocked out this horrible LCH and that after September she is completely done with chemo! The anxiety level in our household is building; we are just watching and waiting to see if it comes back. I wish there were a simple blood test or something that could tell us this, but instead we just watch for symptoms—a looser-than-normal stool is cause for panic, a non-descript spot on Ivy’s skin makes for a nail-biting afternoon. Ugh.

Anyway, since I probably won’t update until next week, I just wanted to wish my sweet boy Jasper a very happy 4th birthday on December 3rd. It is amazing to think that I’ve been a mom for four years! And how amazing to watch Jasper grow from a tiny, bald, yellowish newborn to a strapping, energetic, athletic, talkative boy, full of thoughts and ideas and stories. We love this kid to pieces! Happy birthday, Jasper!

Thanks for checking in, as always.

Love Allyson, Pete, Jasper and Ivy

Wednesday, November 23, 2005 7:11 PM CST

Ten weeks down, two to go! Then we start maintenance, which we are happy about, but also very anxious. Ivy relapsed quickly the last time we went to maintenance. This time, of course, it will be a different drug regimen, but we still don’t have any idea what it will entail. Dr. T was not in clinic today, so we have to wait until next week to find out.

Ivy starts the prednisone taper today and we are also very excited about this! Maybe, finally, we can start sleeping for more than 2-3 hours at a time. Of course, her weight gain will also slow down, so there is a bad side to the taper too. Today, at her weigh-in, she was this close to 18 lbs. If they’d weighed her half an hour later, after she’d gobbled cheese, raspberries and half a banana, she would have made it!

And guess what else? We finally made the acquaintance of the other LCH patient at CHO! After hearing about her for months (only that she was a teenager with LCH in her skin and GI tract, just like our very own Ivy), we finally met! I did wonder whether our paths would ever cross in clinic and last week I almost asked a nurse how “the other LCH patient” was doing. Anyway, her name is Dominique and it sounds like the treatment is working for her, even maintenance. Here’s hoping Ivy follows that path as well.

Ivy had her flu shot today, so I am the only holdout in our household. I went to get one last week, only to be told they were out of shots. That very day I changed doctors (not because of that, but that was the final straw in a haystack of other annoyances), so I must wait until December for my shot. I dread it. Poor Ivy was in such a great mood this morning, charming everyone with her grin, then suddenly she was betrayed by Nurse Courtney coming after her with a big needle. Oh, the tears broke my heart!

We’ve gotten some sad news of other CHO oncology patients this week…three kids ranging in age from one to 14 have lost their battles with various types of cancer, so we are especially thankful that our Ivy seems to be thriving right now. We can’t ever take it for granted.

Happy Thanksgiving to you all.

Love Allyson, Pete, Jasper and Ivy

Thursday, November 17, 2005 0:04 AM CST

I did not expect it at all, but today at clinic we got GOOD news. The scan showed that the “thing” in Ivy’s lung has shrunk considerably; in fact, according to Dr. T, if they didn’t have the first scan to compare it to, they might not even notice anything was amiss—they would think what they were seeing was “artifact” from the anesthesia. So this calls for a major YIPPEE!!!

What is not explained is Ivy’s continued shallow, rapid breathing. Usually, the lung symptoms clear up before the imaging does, but not so in Ivy’s case. She is the reverse. But, since the “thing” has mostly cleared up whilst under treatment for LCH, the assumption is that is LCH and so for now, we will forgo the biopsy. This is also great news!

Even before we got this good news, Ivy had her regular weigh-in and finally, finally, finally crossed both the 8 kilo mark and the 17 pound mark. She is 8 kilos exactly, which calculates to 17.6 lbs. Her appetite has been great and she has her huge cheeks to show for it! Dr. Beach said Ivy resembles Humpty Dumpty with her round belly and face and twiggy arms and legs. I said I had been thinking of Tweedle Dee and Tweedle Dum. Or maybe one of the Teletubbies.

I asked Dr. T about his recommendation about skipping the flu shot for Ivy, since I know many LCH kids are instructed to get it no matter what. I thought maybe when Ivy goes to maintenance her body might be more likely to respond to the vaccine, but Dr. T told me of a newly published study which indicated that roughly 50% of kids who had either been on chemo in the past or were currently on it had some response to the vaccine (and that means 50% had no response). It was a flawed study with a very small sample size and it didn’t indicate how long the kids currently off chemo had been off it, nor whether the kids were also on steroids, which Dr. T says is actually more likely to be causing the low lymphocyte counts and thus not allowing the vaccine to “take.” Sorry for the technical explanation, but there are other LCH parents reading this who might like the details. Basically, the upshot is that Ivy will get a flu shot at her next clinic appointment. Whether or not it does any good is anyone’s guess.

We spent 5 hours at CHO on Monday, 4 yesterday, and 3 today. Of course Monday was the CT scan and today was our clinic appointment, but yesterday they wanted to do a dye study of Ivy’s Broviac to find out why we almost always struggle to draw blood from it (the nurses couldn’t do it on Monday either). They inject dye into the Broviac while they are x-raying to see if there are clots. The whole procedure takes 15 minutes max, but because Ivy was a “work-in,” meaning she wasn’t on the schedule, they really took their time getting to her. Of course, the Broviac performed well for the radiologist (“It appears to be working just fine!”), but half an hour later, in clinic, Nurse Cynthia really struggled with the blood draw. And today’s appointment was so long because they had a hard time drawing the blood back before they could inject the chemo. The Broviac is a blessing and a curse, that’s for sure.

Well, that’s our super great news for this week! I cannot tell you the relief and joy that washed over me when Dr. T. told me how much Ivy’s lung had improved. I really, really expected bad news. So this week we are the lucky ones--let’s hope it continues!

Love Allyson, Pete, Jasper and Ivy

Monday, November 14, 2005 7:21 PM CST

The CT scan is behind us, but we probably won't hear results until our usual Wednesday morning appointment.

We arrived at CHO right on time, at 6 am, but the scan was delayed by an hour, for reasons unknown to me (some of the nurses were up in arms about something though). Anyway, I am one tired Mama, can't wait to go to bed!

I'll be putting up new pictures either tonight or tomorrow, including Ivy in her very first pigtails! She adores them and keeps touching them. When they're not in, she very effectively communicates, "Put the pigtails back in, please." Her chemo has caused her hair to thin in the front and on top, but in the back it is past her shoulders, perfect for pigtails!

Jasper had his flu shot and typical for him, did not even flinch. He is one tough little guy when it comes to pain and always has been. He did not inherit this from me (just ask the dentist I saw over the weekend).

Of course, I will update as soon as I hear anything about Ivy's scans.

Thanks for checking in.

love Allyson, Pete, Jasper and Ivy

Wednesday, November 9, 2005 7:19 PM CST

UPDATE
Holy cow, they want us at CHO at 6 am Monday for Ivy's CT scan. Of course, we'll be there, but isn't that still the middle of the night?

Also check out the photo album for a photo of the royals and Maria Shriver...

Ivy is doing great this week! Her eating is good, her sleeping is pretty good (I think there is a direct correlation there), and her mood is good.

Everyone at clinic was delighted to see the “old” Ivy, the girl who grins freely, waves indiscriminately, toddles proudly, and calls everyone either Mama or Dada. Clinic was very crowded and busy this morning, but it seemed as though everyone was having good appointments—good cheer abounded. How many times have I used the word good so far?

Anyway, Ivy gained about half a pound this past week, so she’s not quite at 17 pounds, but we are happy with the weight gain nonetheless. We’ve decided to skip the bone scan since her walking seems to have taken off again. The chest CT scan still has not been scheduled and it’s Blue Shield’s fault (or maybe the medical group?). They have not authorized the scan, not that they won’t, but just that the bureaucrats’ workload is backed up. Dr. T and Nurse Cynthia both seemed peeved by this. I guess I am too. But maybe I’m just wanting to avoid bad news…

We have four more weeks of induction. In two weeks we will begin the prednisone taper. I am looking forward to this! I asked Dr. T if he has a plan for maintenance and he said, no, not yet, but that it will be different than last time. Well, of course. Let’s just hope that this time it keeps Ivy in remission.

Jasper is doing great as well. Last week I went to a parent/teacher conference at his school and was told that all the kids like Jasper and want to play with him. Maybe she tells this to all the parents, but it warmed my heart. She also told me that he had his first time-out, which shocked me. I think of him as being wild at home, but on his best behavior at school (at least that’s how I was as a child; Pete too, I bet). But then we both agreed that it means Jasper is comfortable at school and that’s a good thing. I am so glad we switched schools!

On Friday Jasper is scheduled to get his flu shot, one of the many sacrifices he makes for Ivy. We all must get one, except for Ivy, not that it would hurt her, but Dr. T thinks that with the chemo, it wouldn’t “take.” No sense in subjecting her to more pain, right?

Pete and Ivy had a brush with royalty on Monday. Prince Charles and Camilla were visiting Alice Waters’ Edible Schoolyard, which happens to be two blocks from our house, so Pete took Ivy over there to see them. He got some photos too, so maybe later I will upload them. Ivy doesn’t appreciate the significance of the British royals, but Pete was pretty excited!

When and if the CT scan gets scheduled you will read it here…Until then,

Love Allyson, Pete, Jasper and Ivy

Wednesday, November 2, 2005 10:58 PM CST

How is Ivy doing? I get asked this almost daily and I never know quite what to say. For now, I guess she is stable—her skin and GI tract appear healthy, though she did have a few looser stools over the weekend that threw Pete and me into stress mode. No blood, but there was a bit of mucous, which probably originated in her nasal area (at least when I mentioned this to two oncologists, both seemed to find it likely). Her lungs are still a mystery. She has a chronic cough; in fact, she sounds like a smoker, but as far as I know, she’s not lighting up when I’m not looking.

So Dr. T wants to do another CT scan, to see if that mysterious thing on her lung has improved or not. If not, well, then it’s probably time to come up with a new therapy. I really, really hope this is not the case.

He also wants to do another bone scan, because he’s concerned that she stopped walking. I have to point out that she never utilized walking as a mode of transportation—it was more of a parlor trick, brought out to entertain, to elicit applause and cheering. So maybe she just got bored with that…But the other thing is that she has been cranky for two weeks now, and while that could be due to prednisone-induced moodiness, it could also be that she’s in pain. So the bone scan will rule out bone infarction (I think that’s what he called it), which can be caused by steroids. My mother’s instinct tells me Ivy’s bones are fine, but my mother’s instinct has been wrong before (I really thought her chest CT scan would be clear).

So both of those procedures will be scheduled for some time next week, both under the same anesthesia.

Ivy’s weight is stable too, but of course we would prefer that it be climbing ever upward. As it is, she has been just over 16 pounds for several weeks now. No gain, no loss.

So that sounds pretty stable, right? Nothing acute going on, no major changes. But always something to be concerned about.

Anyway, our Halloween was fabulous! We stayed out too late trick-or-treating and came home exhausted, but the lion, the cow, the witch, and the goofy guy (yes, I’m talking about Pete—his costume consisted of an ugly 1970’s suit and a purple wig, so I’m not sure what to call him) had a wonderful time. Luckily for us, Jasper is willing to share his loot and prefers the brightly-colored candy over the chocolate. This is what’s called a win-win situation.

Jasper had his cavity filled yesterday and says he likes going to the dentist. This is one pleasure I hope to be able to deny him! Also, I forgot to mention that while we were in San Diego it was discovered that Jasper knows how to swim! Well, maybe I should say he knows how to not sink to the bottom when he’s in deep water. He’s able to paddle a couple of feet to the side. Anyway, we are proud of this little guy!

So that's our update. I will let you all know when Ivy's scans are scheduled. Until then,

love Allyson, Pete, Jasper and Ivy

Thursday, October 27, 2005 1:13 PM CDT

The trip to San Diego was absolutely wonderful. It may sound weird to say that about a funeral, but really, it was more of a big family reunion. There were four generations in attendance and every single one of my grandfather’s descendants was there—that’s 23 people, not including their spouses! The service itself was military, since my grandpa was a WWII vet (not too many of those left), who served in the South Pacific. It was on a hillside overlooking San Diego Bay and Coronado Island, very solemn and ceremonial.

We had a great time visiting with everyone, meeting two of the newest great-grandchildren for the first time. Ivy improved somewhat over the time we were there and slept really, really well, but was still not her smiley self. I’m sure everybody understood what duress she’s been under and that’s what’s driving her personality lately. Anyway, I put some photos of the trip in the photo album—please take a look.

Yesterday’s clinic visit was uneventful, other than the fact that Ivy fussed the entire time and we met yet another oncologist, Dr. Beach. Dr. Beach was the first doctor I spoke to at CHO, over the phone, when Ivy was first diagnosed. She was helpful and knowledgeable back then and it was great to finally have her meet Ivy. She suggested that maybe Ivy’s “cold” symptoms are actually allergies, since her sleeping was so much improved in San Diego and her nose has run clear fluid the entire time. The practice of medicine is made up mostly of educated guesses, I guess. Dr. Beach did tell me that the field of oncology consists largely of experiments. Of course, I have learned that firsthand in the past year. Anyway, we are at the halfway point with this newest induction phase: six weekly chemos down, six to go.

Ahhh, a nice short update this time…we are getting excited about Halloween—I will try to post pictures of my scary lion and sweet cow. And tomorrow, October 28th, is our fifth wedding anniversary. These five years have flown by. It’s hard to believe we hadn’t yet made the acquaintance of Jasper and Ivy on October 28th, 2000. Now they rule our lives!

Until next time,
Love Allyson, Pete, Jasper and Ivy

Thursday, October 20, 2005 11:38 AM CDT

Ivy is just miserable and so are we. She woke up multiple times last night, coughing, crying, or both. Now, at 8:45 am, she is fussy, fussy, fussy. Her cold is tenacious, not getting any better. Dr. T said maybe it’s RSV (respiratory syncytial virus), not that it matters, because we wouldn’t treat it. It’s not too serious unless you are a preemie. Like a cold, it just needs to run its course.

He said that viruses (other than chicken pox) don’t seem to be problem for immuno-compromised children, but we need to monitor her carefully to make sure a secondary bacterial infection doesn’t set in. She did have a fever of 100 degrees on Monday night, but it appears to have been a one-time thing. So, anyway, on top of being sleep-deprived, we are worrying about every little symptom. She’s not a well baby.

We are leaving for San Diego tomorrow for the funeral and family reunion. We are looking forward to it, but wishing that Ivy didn’t have to meet many of these relatives for the first time in her pathetic state. We want them to see the happy, fun-loving Ivy, not this whiny, drippy, droopy little girl.

We will bringing along our little pharmacy: prednisone, zantac, bactrim, Tylenol, benadryl, and maybe some cough medicine so she can a little sleep now and then. It’s funny, because I am the type of person who takes approximately one Tylenol a month—who ever thought we’d be this well-stocked on meds?

I asked Dr. T about his gut instinct on Ivy’s mysterious lung thing and he said he thinks it’s probably LCH. Well, we do too, so that’s no surprise. But it is a bummer, because this round of chemo does not appear to clearing it up. Yesterday Ivy had Dose #5, so there are seven more to go. I’m trying to be patient…

We also had a bit of anxiety on Tuesday evening. Cynthia, one of Ivy’s nurses, called to say that her labs showed low sodium and calcium and even though we’d be in clinic first thing in the morning, they wanted to re-do Ivy’s chemistries that very evening. Luckily for us, we live 10 minutes away from CHO, whose lab is open 24 hours, but still we were quite anxious. Why couldn’t they wait until morning? Everything turned out to be fine, but it was just another little event adding to our stress levels. Actually, I have no idea what low sodium and calcium levels mean, but I guess I don’t have to find out at this point in time!

On to Jasper news: he had his very first dentist appointment on Tuesday, and wouldn’t you know it, he has a cavity! I am so disappointed. I know it’s minor in the grand scheme of things, but I’m hoping this doesn’t mean he’s in for a lifetime of expensive and painful dental work. Poor little guy…

Also, for those of you inclined to such things, could you add a few people to your prayer and positive thought lists? Christopher is another LCH warrior in Canada who will be having a lung biopsy, bronchoscopy and major dental work done on Monday (www.caringbridge.org/canada/christophersstory). And then there’s Jamie, Heather’s husband who had his football-sized spleen removed last week. I don’t know many details, but we are hoping that whatever the pathology report reveals, it’s treatable. We want Jamie to see baby Max grow up!

There’s a positive story in our world of pediatric oncology too…I reported several weeks ago that Dillon would be eligible for a liver transplant; well, since then they’ve been on a crazy roller coaster ride, including a trip to Seattle Children’s Hospital (which they paid for out of pocket!). In short, Dillon did not get a liver transplant, but thanks to Seattle, his cancerous liver was resected and things are looking very positive for Dillon! You can check out his story at www.caringbridge.org/ca/dillon.

Okay, off I go to start getting ready for our trip…please wish us safe travels and Ivy a speedy recovery. Thank you!

Love Allyson, Pete, Jasper and Ivy

Saturday, October 15, 2005 4:19 PM CDT

We made it to San Diego just in time—my grampa passed away early Wednesday morning. He was 89 years old. It sounds like it was a peaceful passing and for that we are happy. Rest in peace, Grampa.

There will be a service, probably on Monday, October 24th, so we will be driving down to San Diego again next weekend. We are looking forward to seeing many of our family: Grampa’s six children, 12 grandchildren, and six great-grandchildren, as well as many of their spouses.

On to Ivy news: she is 16 months old today! She got her chemo on Wednesday, but her cold seems to be getting worse, instead of better. Pete, Jasper and I each managed to fight it off in the space of 2-3 days, but not little Ivy. They don’t seem too worried about colds at clinic, but I hope it doesn’t lead to something more serious, especially with her mysterious lung ailment.

Also, remember I was wondering about that 80% survival rate associated with LCH? Well, thanks to Don Johnson (not the actor!), I now know that that number refers to multi-system kids, so that is good news for Ivy. I think most of the 20% that don’t make it have some risk system involvement (liver, spleen, bone marrow) and Ivy does not have this (yet, anyway). I met Don at the meeting at Stanford, though I had been emailing him for months. He was kind enough to put Dr. McClain’s Powerpoint presentation on his website. Here is the link: http://www.nottheactor.com. Thank you, Don!

Anyway, we are really hoping Ivy’s counts stay up, so she can get her chemo each week. I just want to get through these 12 weeks as quickly as possible. I am worried about the massive amounts of prednisone she’s getting. I think it’s quite likely she will end up with osteoporosis and cataracts, as well as stunted growth. Of course, we will gladly take those ailments over LCH any day, but it’s not fair to Ivy that she has to deal with any of these issues. Life isn’t fair and Miss Ivy is learning that early (though, thankfully, she is not yet aware of the lot she has been dealt). Dr. T. has decided to keep Ivy on this high dose of steroids for 10 weeks, rather than tapering for Weeks 5 and 6 and then only giving it three days/week for the last six weeks. It’s a good move, but I still worry.

That’s all the news from here, I guess. We had rain last night, for the first time since June, I think. I’m one of the weird ones who love it!

Thank you for checking in…
Love Allyson, Pete, Jasper and Ivy

Tuesday, October 11, 2005 6:59 PM CDT

What a crazy weekend we had…we had our histio meeting at Stanford on Saturday, drove back up to Oakland to pick up the kids, then sped on down to San Diego for a 36-hour visit, arriving at one a.m. at the Hilton (thank you, priceline.com!).

It was a last-minute decision to see my grampa one last time, as everyone thinks this will be his final week with us. Was it a crazy idea? Yes. Was it worth it? Most definitely. Grampa was physically debilitated by a few strokes he had early in the summer, but he appeared pretty lucid. He was happy to see me and seeing Jasper and Ivy really seemed to perk him up. He can’t speak very well because his tongue is partially paralyzed, but he did say my name several times. It was Ivy’s first time meeting him and she did him the honor of saying “Grampa” (Bahmpa). He got tired quickly so it was a short visit, but I am so happy I was able to make it down there one last time. We also had short visits with several other aunts, uncles, and cousins (and of course, Gramma!), so it was a good weekend overall.

We drove back up yesterday and Ivy did us the favor of taking a four hour nap! We think she is or was extremely anemic, so even though we enjoyed the quiet time, we were slightly worried about her. Today, of course, she refuses to nap at all. I haven’t yet heard what her counts were this morning, but I’m thinking her hemoglobin has come back up.

The meeting at Stanford was great. We met other families whom we had previously only been in touch with via email, so it’s nice to have faces with names. We met another father whose infant daughter also has LCH with GI involvement. There are supposedly about 300 new cases of LCH diagnosed each year in the U.S., with less than 1% of those presenting in the GI tract. So that would be three or fewer cases of GI involvement, right? Well, Ivy is one, this man’s daughter is another, and I am in contact with the mother of the third via email. What a small club this is, and how bizarre that I know both of the other families.

Each family was able to share their story in front of the group, so we heard some interesting stuff. For one thing, everyone’s story is different, in terms of symptoms, path to diagnosis, response to treatment, long-term effects, etc., but there were two common threads running through each tale. One was about misdiagnoses, consultations with specialists, and the length of time it took to finally get a correct diagnosis (in Ivy’s case, about five months from her first symptoms to her final diagnosis). The other common theme was the family hearing, “You need to report to the oncology clinic immediately,” and how frightening that was. As each family told their story, I remembered experiencing the shock and disbelief—histiocytosis? Could you spell that? Oncologist? No way! It can’t be true. This can’t happen to us! But of course, it did.

Anyway, Dr. McClain was very approachable and sympathetic to all of us. The most important thing that I came away from the meeting with was that Ivy does not necessarily have a poor prognosis. He said that GI involvement in and of itself does not carry a poor prognosis, but that often it accompanies liver, spleen or bone marrow involvement and these patients do not fare so well. Ivy has none of these! I feel calmer now and suddenly have a strong sense that we may get to keep her after all. There are no guarantees, obviously, and we will never lose our vigilance, but maybe we will see her first day of kindergarten, giggly sleepovers with girlfriends, prom dates (no, not sleepovers with prom dates!!!), and her first day at her first-choice university! Dr. McClain said that LCH carries an 80% survival rate, but I’m not sure if he includes the bone- and/or skin-only patients in this group, who have a 100% survival rate. For them it’s just a matter of how long their treatment will last and what kind of permanent effects they will have, either caused by the disease or the treatment. I’m hoping this group is not included in the 80%, because that would mean higher survival rates for the multi-system kids then, right?

I guess I’m getting a little rambly now; it’s just that I hardly had time to process the information from the meeting, before I was racing down I5 and having a mini family reunion. It was a hectic, but very worthwhile weekend, all the way around.

Ivy’s eye problem (puffy, oozy, stuck shut after sleep) came back last week also. The pediatrician said if it accompanies a cold, which it did, that it’s probably nothing to worry about, and sure enough after two or three doses of eyedrops it cleared right up. I’m not including that because it’s exciting, earth-shattering news (but really, is any of this?), but just because I use this site to keep a log of Ivy’s illnesses and treatments.

And guess what, I just talked to the nurse at clinic and Ivy’s hemoglobin is at 9.1, much higher than I suspected. The nurse said it would not have bounced back in just one day, so her four-hour nap yesterday was just plain good luck! And guess what else? While I was typing this, Ivy put herself down for a nap. That has happened exactly one other time in her 16 months of life. What a constant surprise she is.

This got long, didn’t it? Thanks for reading, if you even made it this far! Until next time,

Love Allyson, Pete, Jasper and Ivy

Wednesday, October 5, 2005 7:23 PM CDT

I know, you’re all dying to know, “What’s up with Ivy’s lungs?” It’s been more than three weeks since she started her shallow breathing, almost two weeks since the bronchoscopy, and guess what? We still don’t know!!!

Every single culture came back negative. The stains they did for the Langerhans’ cells also came back negative. We take this as good news, though it doesn’t rule out LCH in the lungs. In fact, it would be unusual to be able to diagnose it from bronchoscopy fluid, but since they saw increased histiocytes, they thought maybe they were Langerhans’ cells.

So Dr. T is recommending that we do nothing until the end of the 12-week induction phase. Then, if it really is LCH in her lungs, she is already being treated for it and her symptoms should go away by then, since her other LCH symptoms have gone away. If her symptoms have not gone away and another CT scan continues to show that odd-looking thing in her lung, then she would need a biopsy to see what we’re dealing with. I asked him what in the world could it be, if not LCH. He was vague and mentioned something about a parasite or inflammation. He did say it looks nothing like a malignant lesion. For those of you who don’t hang out in oncology circles, malignant=cancer. So that’s good, right? Can you imagine, a baby with both LCH and cancer? It’s happened, but please, oh please, not to us.

So, here we are, still with no answers. Sometimes I marvel at modern medicine, but then other times I am sorely disappointed. They can take pictures of your insides and explore your lungs with a teeny tiny camera, but they still can’t figure out what’s wrong!

Ivy has a mild cold which came from her brother and is now being passed to one or both of her parents, but other than that (and the LCH, of course), she’s really doing well. She practices walking all the time now, but only if she has an audience to clap for her. She has new words every day. And she’s very happy.

We will be attending a meeting at Stanford on Saturday, all about histiocytosis, led by the “wizard” of histio doctors, Ken McClain from Texas Children’s. I’ve been looking forward to it for months, hoping to learn a lot and also to meet other histio families in Northern California.

That’s all for now. Perhaps I will have something to report from the meeting on Saturday, but for now, no news is good news.

Love Allyson, Pete, Jasper and Ivy

Wednesday, September 28, 2005 5:59 PM CDT

Today’s clinic visit was pretty good and somewhat bad (isn’t that always the case with LCH?). Ivy’s hemoglobin came up a bit, to 7.6, so we are out of transfusion-land (yay!) and her ANC came up as well. It’s still not high enough for chemo, but she’s no longer neutropenic. Both of these numbers should only get higher before her next chemo.

Alas, one by one, her lung cultures are coming back negative for various types of infection. There are a couple outstanding, plus the fungi, but the cytology report shows increased histiocytes. They are in the process of doing the special stains to see if these histiocytes are Langerhans cells. I’m sure they are. I really don’t have a good feeling about this.

In the event that Ivy has lung involvement, her treatment will not change, as long as she continues to respond. And even though lung involvement is classified as high-risk, it doesn’t change her prognosis at all (it’s hard to get much worse than bad, though, isn’t it?). I guess we will know in the next couple days if this is really the case. On the bright side, if the stains show LCH, Ivy won’t need a lung biopsy. So we’ve got that going for us. Oh yay.

One other thing that pushed our clinic visit more into the good category rather than the bad is that Ivy walked and walked and walked today! All the nurses cheered her on and she even performed for Dr. T. She is so proud of herself!

I will update when I get the full lung report, hopefully in a day or two. Thanks for checking in on our girl!

Love Allyson, Pete, Jasper and Ivy

Tuesday, September 27, 2005 5:44 PM CDT

Well, for the first time ever, Ivy’s neutropenic. Her ANC is 390, so no chemo for her tomorrow. Also, her hemoglobin is 7.3, so she’s this close to needing a transfusion (7.0 is when they transfuse). I guess we are lucky in that Ivy has been getting chemo for six months now, and this is the first time either of these things has happened. We will keep our clinic appointment tomorrow and Dr. T will decide if Ivy needs a transfusion.

I know you’re all waiting to hear about the lung cultures, but there’s no news in that department, which I think is a bad thing—it probably means there’s no infection, but we are still hoping it’s not LCH.

Right now we are anxiously awaiting the arrival of our friends Susan and Liam from Pittsburgh. They should be knocking on the door any minute and we are so excited! We will be having a busy, fun ten or so days with them and I really hope we don’t have bad news about Ivy in the midst of it all.

I just heard about a six-year-old girl who lost the battle with LCH and that really threw me. I keep thinking if Ivy can make it to age three or so, then maybe we will have won, but that’s really not so. I really could not stand to fight this disease for six years, only to lose. Ivy seems really well right now, but this sad story keeps interjecting a bit of reality into my thoughts. As long as Ivy is with us, we will never overcome this fear.

Anyway, I guess it’s a bit of a jumbled update with some random thoughts thrown in…thank you all for your well wishes, prayers, kind thoughts and everything else.

Love, Allyson, Pete, Jasper and Ivy

Friday, September 23, 2005 2:43 PM CDT

The bronchoscopy with lavage went smoothly this morning, despite the hospital calling us at 7:30 am, saying we were supposed to be there already (yesterday we had gotten drastically different information about when and where).

Dr. Zee, the pulmonologist, told us absolutely nothing definitive. There are no obvious signs of infection, but there is some inflammation and Ivy’s lungs are “friable,” meaning they were very sensitive to the scope and scraped easily (as I understand it). He also said it didn’t look like obvious LCH, but that is certainly not ruled out either. And her tubes are clear, meaning no mucous or swelling, I guess.

So they are using the lavage fluid to culture for all different kinds of organisms: bacteria, fungi, and even viruses (I think). We may know something by mid-week, but the fungi can take up to two weeks.

What we are hoping for is some kind of lung infection that can be treated, or that nothing shows up, but Ivy’s symptoms and the weird thing on the CT scan disappear. So you can focus your thoughts/prayers/vibes in that way, please!

Ivy is in good spirits now. It’s amazing that one-and-a-half hours after they take a baby into the OR, knock her out completely, stick a camera into her lung along with some water, then suck it back out again, they say she’s ready to go home!

Until next time,
Love Allyson, Pete, Jasper and Ivy

Wednesday, September 21, 2005 8:49 PM CDT

Bone scan: NORMAL!!!

Brain MRI: NORMAL!!!

Wow, what happy news we received from Dr. T today!! Also, Ivy has finally crossed that 16 lb threshold—16.28 lbs to be precise. Her skin looks much better and she was all smiles at clinic. Her blood counts are pretty good too.

So Pete, Dr. T and I were all in good spirits today. Then we had our pulmonary consult, which was neither good nor bad. The doctor is quite young but said he has done hundreds of bronchoscopies. He also didn’t seem to think it unlikely that Ivy has LCH in her lungs, whereas Dr. T seems more skeptical. The way I see it, Dr. T has seen more cases of LCH in general, but the pulmonologist has seen more cases of lung LCH. So he’s probably right.

We’ll find out sometime next week. The bronchoscopy is scheduled for 8:30 Friday morning, but it will take several days to see if anything is cultured and to do the cytology study (which may or may not show LCH).

Ivy can’t have anything to eat or drink after midnight tomorrow. It will be a long, hard night, I suspect. She’s used to having a bottle around 4 am.

Anyway, that’s the news from here. We are all feeling rather jolly tonight. Hoping it can continue…

Oh, wait! I almost forgot to add: Ivy took three steps at clinic today!!! They were very tentative and wobbly and she refused to repeat the feat, but nonetheless her baby book will state that she took her first steps on September 21st, 2005. What a day it’s been…

Love, Allyson, Pete, Jasper and Ivy

Monday, September 19, 2005 6:26 PM CDT

Here’s Ivy’s schedule this week:

Tuesday
12:30 pm: register at CHO, have radioactive isotope injected into Broviac
4 pm: bone scan
5 pm: brain MRI

Wednesday
2 pm: clinic appt
3:30 pm: appt with pulmonologist

Friday
Morning sometime: bronchoscopy with lavage

She also had a “well-baby” check up scheduled for tomorrow, but I cancelled that. I think she is seeing enough doctors for the time being, don’t you? And it’s pretty clear that she’s not “well.”

Anyway, tomorrow will be another horrendous day where poor Ivy is not allowed to eat anything after 8 am. Then I will have to keep her content until they take her in at 4 pm. Yuck.

They are doing all these tests because if her lungs have LCH now, maybe other parts of her do as well. We are hopeful that this is not the case. We are also trying to be hopeful that she doesn’t have LCH in her lungs, but after that semi-upbeat update on Friday, we are not so sure. The lung infection theory doesn’t hold up—she’s not had symptoms, fever, nor elevated white counts. She is still panting. It doesn’t seem to bother her per se, but it’s definitely not normal.

We had a rough night last night, with Ivy waking up crying inconsolably at least three times, sometimes for as long as 45 minutes. I think it’s due to the prednisone. Let’s hope tonight is better, otherwise tomorrow will be extremely unpleasant.

On a brighter note, the wedding was wonderful: beautiful, warm (even though it was freezing cold!) and personal. Pete and I were honored to be asked to sign the ketubah and Jasper and Ivy have a new fan club, made up entirely of wedding guests. My birthday was fine and my present from Pete will likely be a new Burmese kitten! We have approval from Dr. T, as long as we can keep Ivy away from the litter box. Of course, we would do that anyway, but it’s especially crucial for a child on chemo.

Fingers crossed/positive thoughts/prayers that her scans are normal and that the mystery thing in her lung is residual infection or something else “manageable.” Thank you.

Love Allyson, Pete, Jasper and Ivy

Friday, September 16, 2005 9:33 AM CDT

**UPDATE**

Just a tiny, very quick update as we are scrambling to get out the door for our wedding weekend…

We do not know for sure if Ivy has LCH in her lungs—what Dr. T read on the scan as cysts caused by LCH are likely artifacts of the scan itself, due to anesthesia (they prefer not to anesthetize for chest CT scans, but with babies there is no choice). But there is a concerning element in her lower right lung—very obvious even to my untrained eye.

So Ivy will have a bronchoscopy next week sometime to take a look and culture for infection. If nothing turns up there, then she will have a lung biopsy. We are now hoping that Ivy has or had a lung infection!

Pete and I are feeling better after this morning’s meeting with Dr. T and Dr. Hardy, the pulmonologist. We might actually enjoy this weekend!

Thank you all for your kind messages in the guestbook and emails. They mean a lot to us.

It’s bad news. The CT scan showed something in Ivy’s lungs which is probably LCH. She didn’t have the scan until after 5 pm (not allowed to eat all day!), so we should have known when Dr. T came into the recovery room well after 6 that something was up. He had waited around the hospital until the results were in. We were in the midst of changing a diaper and Pete said he knew that Dr. T had bad news by the way he waited until we were finished with that task. But I was so clueless, I really thought everything would be fine. I was so wrong.

Most of what he said is all jumbled in my mind right now. He will meet with the lung specialist this morning to determine if Ivy should have a lung biopsy or not. Then we meet with Dr. T around 9:30. He let us pick the time, like his day revolves around Ivy. As it should.

He did say that Ivy’s current chemo protocol is effective against lung disease so we might just stick with that. The problem is that we don’t know if Ivy had lung involvement all along, or if it just appeared during our dalliance with 2-CDA.

I probably won’t have time to update after our appointment this morning, because then we will be packing for our short wedding trip. Yes, we’ve decided it’s better to go celebrate than stay home and mope.

Anyway, please give Ivy all the prayers you can muster. This is serious and it’s very scary.

Love Allyson, Pete, Jasper and Ivy

Thursday, September 15, 2005 10:31 AM CDT

**UPDATE**
Ivy's CT scan is scheduled for 1 pm today. She only needs to be sedated so it's okay that she's eaten since midnight (only a bottle at 4 am and nursing at 9:30). But now she's hungry and grumpy and she still can't eat! Also, Dr. T didn't get to review the frontal xray yesterday, but according to Nigel, one of the radiology nurses, it looks totally normal. That's a relief; now if only the CT scan says the same thing...

I will update when we find out anything. In the meantime, let's just hope that Ivy and I can get through the next few hours until she can eat again.

If I had updated a couple of days ago, it would have been a positive update—now, it’s most definitely mixed.

On the positive side, Ivy’s GI symptoms resolved within a few days of re-starting the prednisone. And day-by-day, her mood and general malaise improved as well (though we have seen a bit of the “’roid rage” from the prednisone). Ivy has also regained the weight she lost, about a pound in one week. So that’s all great.

What’s not great is her skin, spottier than ever. And a new development: on Monday we noticed her breathing was fast and shallow, even when she sleeps. So today Dr. T listened to her, said she sounded fine (the air is moving in and out properly), but did indeed note that she’s breathing fast and shallow. So he sent her for a chest x-ray.

That in itself was horrible, because they strap down the screaming baby, and then the poor mom gets to watch her child be zapped by radiation from behind a window, all the while smiling and waving at the poor baby, trying to reassure her that everything is fine, when in reality, nothing is fine at all. And then, when the baby is finally nursing and calmed down, the poor mother is informed that they messed up one of the shots and the baby has to be strapped down for the procedure AGAIN. Ugh.

And then, if you think my anxiety level isn’t high enough at this point, Dr. T tells me that the xray is “uninterpretable,” because Ivy didn’t inhale deeply enough (he can tell this by counting how many of her ribs are visible). So now Ivy is to have a CT scan of her lungs.

I don’t know what to think about all of this. I have heard of children who have LCH in their lungs, with no symptoms, that is only diagnosed by CT scan, not xray. So, if this is true, and the CT scan shows LCH in Ivy’s lungs, does that mean she had it there all along, or is this a new development? And if it’s new, well, that’s very, very bad, since she’s been getting chemotherapy for almost six months now and still the LCH is taking over her body.

Dr. T said he does not expect to find anything on the CT scan. But I know how he likes to be reassuring, so maybe he thinks it’s best to not worry me until he knows something definitive. He also said it could show many other things other than LCH. What, he did not say.

So now we wait to be scheduled for the CT scan. Because Ivy is so young, she will have general anesthesia and that means no eating or drinking after midnight the night before. Great, try explaining that to a one-year-old who is addicted to prednisone.

Today Ivy is fifteen months old. I have definitive memories of Jasper passing three milestones at this age and here’s how Ivy compares: 1) Jasper started saying “Mama.” Well, Ivy has been saying Mama for a few months now and she also says Dada and Bapper (this is how one-year-olds say Jasper). 2) Jasper finally reached 20 lbs so we could turn his carseat to face forward (yes, our children are small!). Ivy can’t seem to cross the threshold of 16 lbs, so it will be quite some time before we turn her carseat around—maybe by the time she’s two! 3) Jasper was weaned, very easily, I might add. Ivy is still my little nursling and we don’t intend to stop any time soon. Her immune system needs all the help it can get, especially while on chemo through the cold and flu season. And Ivy still isn’t walking, whereas Jasper walked right at twelve months. I try not to worry, since I know this is still within the “normal” range. It helps that Ivy has a cousin the same age who doesn’t walk yet either!

We have a fun weekend planned—it’s my birthday and also our friends Carrie and Brad are getting married on the San Mateo coast. We will be staying on the coast for the whole weekend. Also, here’s a little public service announcement for you all: Saturday is International Coastal Cleanup Day, but even if you don’t live on the coast, you can participate by cleaning up local creeks and watersheds (which all drain to the coast eventually!). Check here to find a location near you: http://www.coastalcleanup.org/intro.cfm Do you think I can drag the bride and groom to Pescadero State Beach for the cleanup? We’ll see!

Well, I think I covered everything. I hope to hear sometime today about when Ivy’s CT scan will be. I will let you all know! Thanks for checking in as always…

Love Allyson, Pete, Jasper and Ivy

Thursday, September 8, 2005 11:53 AM CDT

Well, the upside is no more 3-day hospital stays! Yes, that’s right, Dr. T is taking Ivy off the 2-CDA and we are going back to the original vinblastine/prednisone combo. Ivy responded very well to this the first time, even though she didn’t quite achieve remission. So we’ll be doing it for 12 weeks, then Dr. T will come up with something else for maintenance, since that’s when Ivy relapsed so badly.

Dr. T was obviously worried about Ivy when he saw her yesterday. She was in bad shape—very listless and whiny, not a single smile for anyone in clinic. And very skinny.

Dr. T didn’t want to give the vinblastine yet because her little body is still recovering from the 2-CDA, but he said to start the prednisone right away. We’ll go in next Wednesday for the vinblastine.

Ivy was so tired that she fell asleep in my lap while we were sitting in the pharmacy, then she came home and slept for another hour and a half (not to mention the hour and half nap she’d had earlier in the day). Yesterday was Auntie Beth’s birthday (Happy birthday, Beth!) and Ivy was so droopy it was sad. She only wanted her parents and she wanted to rest her head wherever she was. Then came the prednisone and wham! one hour later she was happy, smiling, and eating (but still needing to be held constantly).

So how do I feel about this latest development? Are we moving backwards? Are we giving up on the 2-CDA too soon? Does Dr. T know what he’s doing? Well, I think if you got three pediatric oncologists in one room, one would say to continue with the 2-CDA, one would say go back to the vbl/pdn combo and one would say to try a new therapy altogether. But Dr. T did consult with Dr. Ladisch in Washington, D.C. and he is in agreement with Dr. T’s recommendation. So I’m comfortable with it. Last time Ivy responded within 2-3 days to the vbl/pdn, so I will worry if that doesn’t happen again, but one day at a time, right?!

And have I mentioned how excited we are not to be planning to be spending every third weekend in the hospital? Yay!

There’s big news for Jasper this week too. Yesterday he started his new Montessori preschool! He was excited and did not shed one tear, much to Mama’s surprise and relief. I will be able to walk him there on my way to BART, and pick him up on my way home, so this is a big bonus. We are all very excited about this school!

There’s also some sad news this week, outside of Ivy’s illness. My friend Carolyn passed away on Sunday, from cancer that couldn’t be treated. I’m hoping she had a peaceful passage and that she’s now in a happy place. Our world is worse off without her in it. Also another friend of ours, with a brand new baby, found out that her husband has cancer, so if you could please add Heather and Jamie and baby Max to your prayer/positive thought lists, they could really use it right now. There is so much suffering and sadness all around us, when just a year ago, we thought just the opposite—we were in such a joyful place with our new beautiful baby girl.

There is some good news about other cancer fighters we know: Dillon is a little boy we met on our first night on the oncology floor back in March. He has had a heck of a year, but the good news is that he’s now eligible to be put on the liver transplant list!! This is the only way he can survive, so it’s a huge relief to his parents. Here’s his webpage: www.caringbridge.org/ca/dillon.

I’ve added some new photos too…take a look.

Thanks for checking in. A lot of people have used the word roller coaster to describe what we’re going through. It’s very apt, but in real life I love roller coasters. This one I despise!

Love Allyson, Pete, Jasper and Ivy

Monday, September 5, 2005 6:15 PM CDT

MINOR UPDATE

I took Ivy in to clinic this morning because once again we were not able to do a blood draw at home. So they weighed her, as always, but unfortunately she’s lost about a pound in the last two weeks. We are very, very worried about her, so I made an appointment with Dr. T for tomorrow. I also tried calling the oncologist at Stanford who has experience with 2-CDA, but he’s out of town until the 12th. I’m just wondering if it’s time to change therapies, or, because the 2-CDA seemed to work for a short period of time, give it a little more time. I just read last night that children who fail to respond to 2-CDA “have a very poor prognosis.” I don’t know if Ivy’s in this group or not, since she did have a response, albeit a temporary one.

She’s very cranky and clingy today, but this is probably due to the chemo, not the LCH. She was like this last time as well. Her appetite is way down, even though in the hospital it was fine.

Have I ever mentioned how much I hate this disease?

We had our own room at CHO for the entire three days and it was heavenly! Now we are spoiled. They had a surprisingly high number of empty beds this weekend, but we have to remember that we probably won’t be so lucky next time.

Ivy did fine, but unfortunately I have to report that her symptoms are back with a vengeance. She has constant diarrhea again and her LCH spots are back in places we haven’t seen since she began chemo back in March (like her groin area and her upper back). So we had slightly less than a week of celebrating that the 2-CDA seemed to be working, when suddenly it seemed that it had stopped working. I just wish there was one single person on this earth that could tell us what to expect with this disease/drug combo. But there’s not.

So now, we continue waiting to see if her disease responds to this cycle of chemo. We have an appointment with Dr. Torkildson on Wednesday the 14th and I am really hoping that I can report improvement. He wasn’t the attending physician at the hospital this weekend, so he hasn’t seen Ivy in almost two weeks (will be three by the 14th).

Anyway, please keep our sweet girl in your prayers and thoughts. We need this drug to work! Once again, we express thanks to the same cast of characters as last time for bringing food and good cheer to the hospital. What would we do without you all?!

Love, Allyson, Pete, Jasper and Ivy

Thursday, September 1, 2005 1:15 PM CDT

Once again, they’ve really got my hopes up—they said they’re giving us a private room. This one is not on the immunocompromised ward, which is better, I think. But this is also subject to change at any time—if they need the isolation room for someone with a fever, we must of course, give it up.

We are to check in at 1 pm, so I must scramble to get us all packed up. Jasper is having his very first playdate sans mama, with his friend Felix, so that helps a bit (of course, he’s my easy child!). Ivy is deeply involved in eating pumpkin pancakes off the floor…I’m not a bad mom, I swear, just trying to get things done.

By the way, Ivy’s sed rate is slightly higher this week…not sure what that means.

I will try to update sometime this weekend.

Thanks for checking in…
Love Allyson, Pete, Jasper and Ivy

Wednesday, August 24, 2005 4:41 PM CDT

UPDATE

I called in for Ivy’s counts. Her ANC is 3070, which is great, but her sed rate is 41 which is high. Normal is 10 or below. Some doctors think it is an indicator of active LCH, but I’m not sure this is true for Ivy. Her highest known sed rate (before today) was 22, and that was before she began treatment. I remember her pediatrician saying that they don’t get concerned until it reaches 40 or so. Well, here we are. But she does have a mild cold and the sed rate will reflect that, so maybe that’s all it is. Ivy’s platelets are in the normal range and both her red and white cell counts are low, but not alarmingly so.

Another piece of information I got today was from another LCH mom who asked her son’s doctor about 2-CDA and how fast he would expect to see a response. This particular doctor has written articles about 2-CDA and has more knowledge of it than most. He said he would go three or four cycles before giving up on it. That’s good news to me, despite the fact that we now know that Ivy is responding after two cycles. It’s also interesting that our docs at CHO as well as the docs that Pete and I emailed last week, Dr. Jubran at CHLA and Dr. Matthay at UCSF didn’t seem to be aware of how long it can take for the 2-CDA to begin working. It just goes to show you how little is known about LCH and even less about LCH and 2-CDA.

By the way, Ivy just had her first poop since last night at 9:30. I am so happy about this! When Ivy is 13 or so, do you think she will be mortified at how much I discuss her potty habits? Of course she will be!

Here it is, one week later, and our LCH path has taken yet a new turn. Ivy’s GI and skin symptoms are all of a sudden subsiding. Since Sunday she has gone all night without pooping! She now poops 3-4 times a day, rather than eight and it’s, ahem, more solid. And if there’s blood, it’s not visible to the naked eye. The rash behind her ears is scabby now—it’s healing. Her diaper area also looks to be much, much better, but she still screams with every diaper change. That could be because she now has a very negative association with diaper changes, or that she’s a one-year-old. Who knows?

We reported this good news to Dr. T today and his response was something about Ivy waiting until just under the wire before she showed signs of responding to the 2-CDA. So the 2-CDA plan continues, assuming her symptoms continue to resolve. We are to bring stool samples in over the next few days to confirm the absence of blood, but even if there is some blood, we can still say she’s responding and will continue the 2-CDA. We will be admitted into CHO on Thursday, September 1. What a wonderful Labor Day weekend we will have.

Dr. T said his first choice if Ivy hadn’t responded at all was to go back to the Vinblastine/prednisone therapy for six weeks (since she responded so well initially) and then try to find something else for maintenance therapy. His second choice would have been the 2-CDA/ara-C combo. Both of these sound good to me. I’m glad he’s not talking about cyclosporine anymore.

Ivy’s appetite is good, but unfortunately she’s not gaining any weight, just holding steady at 7.1 kilograms, which translates to, let’s see, about 15.6 lbs. Such a petite girl. We’ll have to give her digestive system time to catch up, I guess.

Our time at Sea Ranch was short and kind of nice and kind of stressful. Jasper loved it, of course, but Ivy was clingy and fussy for much of the time. Now at home, she seems much happier and able to be content outside of Mama’s immediate vicinity. The highlight for me was a delicious and romantic dinner at the Sea Ranch Lodge with Pete. I will say, without a hint of shame, that Pete and I are food snobs, but this meal ranks in our Top Five of All Time. So if you are by chance heading north and want to drop a wad of cash, stop in at the Lodge. You won’t be sorry (unless you are a vegetarian).

Also, there are a couple of coincidences having to do with CHO and our trip to Sea Ranch. On Monday, we had lunch at a little seaside cafe and on the counter was a jar with a sign on it, asking for contributions for the family of a little boy named Brandon, recently diagnosed with cancer. Then, in the little newspaper there, we read of another little boy, from the same town (tiny hamlet of Gualala), also very recently diagnosed with the very same kind of cancer (Wilms’ tumor), also being treated at CHO. That is a very weird coincidence. Kinda makes you wonder if something’s in the water…The other coincidence is that today at clinic, whom do we meet but Brandon and his family, the little boy on the fundraiser jar (to which we donated, by the way). What a small world it can be at times…

That’s all the news for now…we are still waiting to hear what Ivy’s counts are; just hoping they’re high enough for more chemo!

Love Allyson, Pete, Jasper and Ivy

Thursday, August 18, 2005 11:17 AM CDT

Well, it appears that Dr. T is throwing in the towel on the 2-CDA. We’ve seen no improvement and at clinic yesterday he said he had emailed Dr. Ladisch in Washington, D.C. to consult with him on a new therapy. I have no idea what will be recommended for Ivy, but at clinic next Wednesday the plan will be in place.

I can’t believe we are already through two failed treatments. Ivy’s been in treatment for about five months and we are only slightly better off than we were in February.

Her blood counts are still good. Her Broviac site is still terrible. We are trying a new dressing now, just a big piece of gauze underneath a tight stretchy fishnet “tanktop.” This is the kind of dressing that bone marrow transplant patients use (I’m not sure why).

Ivy is also very fatigued, wanting to be held a lot. Sometimes she’ll just lie down wherever she’s sitting. But her appetite is good—she’s eating raisin bran like it’s manna from heaven.

We are going away for the weekend, to Sea Ranch with Pete’s family. Pete has to come back for work on Monday, but I may stay up there with the kiddos until Tuesday. We are looking forward to it, but at the same time, wishing we didn’t have to cram it all into 2-3 days.

Do I sound glum? Well, I am!

Please keep hoping, praying, crossing fingers that I have better news to report very soon. Thank you!

Love Allyson, Pete, Jasper and Ivy

Monday, August 15, 2005 7:13 PM CDT

A really bad way to start a hospital stay is to be told ahead of time that you will have your own room, be allowed to check into that room (which was glorious: a view of San Francisco, the bay, the hills of Marin, full of sunshine, two beds for the parents, a large bathroom with a shower), then just after you unpack your baby’s clothes and toys, be told that you are being moved to a shared room after all. Oh my gosh, what a sinking feeling.

It’s a long story as to why this happened, but basically the single room was in the immunocompromised unit and they decided they needed the room for a kid who was more immunocompromised than Ivy. So that’s how our weekend started—not good. We were there for 3 nights. Pete and I took turns sleeping at home and luckily, for the last 24 hours of our stay, we did not have a roommate. It’s just amazing how much more relaxed you feel, like you can exhale, let your hair down, feel your blood pressure go down…

They upped Ivy’s dose of 2-CDA and she definitely seems more tired and has loss of appetite, but no vomiting, probably because of the Zofran ($70 per dose!). Unfortunately, her diaper rash is horrendous and causes her a great deal of pain. It must be a combo of the LCH and the constant diaper changes due to the diarrhea. To give you an idea of how many diapers she goes through per day, we know she went through 26 diapers in a 76 hour period (the hospital stay). That works out to a diaper change about every 2 ½ hours. And probably 23 of those diapers had diarrhea. Poor little girl.

Also her Broviac site is inflamed and itchy, probably due to a reaction to the adhesive from the dressing. It’s bright red, spotty and covers most of her chest. Ivy spends a lot of time scratching and ends up pulling the dressing off. This is very bad, because her Broviac is like an infection expressway into her veins. We have to keep it clean and we have to keep it covered. I feel like we spent most of the time in the hospital managing this problem, trying new techniques for the dressing, Benedryl and hydrocortisone. I’m not sure any of it’s working. Thanks to the Internet, though, I have a couple of new options for barrier creams to ask the doctors about.

And as to how the 2-CDA is working, well, we have no evidence that it is. We are being advised to be patient. By next Wednesday, the 24th, we will make a decision as to whether we need to change to a new therapy. Last night as we were being discharged our nurse said, “See you in three weeks!” and my response was, “I hope so, because that means it’s working!” Yes, I’m actually hoping we get to check into CHO again!

But really, I’m feeling very pessimistic about the 2-CDA. I think we will be moving on to something else. I know I’m not supposed to say that—I’m supposed to be positive and hopeful and not lose faith until the doctors tell me to, but too bad. Dr. T really seems to leaning towards trying Cyclosporin next, which I have a bad feeling about. So that’s my next task, to do some research on that.

We have many generous and thoughtful friends and family to thank this week, but please accept my apologies if I inadvertently omit you from the long list! Thanks to Jen and Stuart for an outstanding chicken cassoulet and homemade peach pie, to Adria for babysitting Ivy while I took Jasper for a “playdate” at his new school, to Aunt Sara for helping us get ready to go to the hospital, to Grammie and Grandpa for taking care of Jasper for three days (and bringing him in to visit his sister), to Rebecca and Joe for a truly gourmet meal (wine included—luckily we had almost finished the bottle before we were told that alcoholic beverages are not allowed at Children’s [blush]), to Becky for another gourmet meal, topped off by banana cream pie (oh my! Even Ivy ate a good bit of it!), to Stefano for good old-fashioned burritos, to Katie for very cute hand-knitted hats and a poncho for Ivy, to another Katie for Mickey Mouse hats from Disneyland (Jasper will be thrilled!), to Beth and Harvey for yet another fine meal and for helping us pack up to go home and for a late night pharmacy stop. And to all the above, thank you for the fine company—our hospital stay would have been absolutely dreadful without you.

By the way, today Ivy is 14 months old and she’s finally in size 3 diapers! Way to grow, Ivy!

Alright then, I’ll keep you all updated as to when and if the 2-CDA starts to show some improvement…

Until next time,
Love Allyson, Pete, Jasper, and Ivy

Monday, August 8, 2005 9:45 PM CDT

UPDATE ON THURSDAY
Well, guess what! We get to have a single room at CHO!!! We are so excited. Isn't it sad how happy we get about the littlest things? I'll try to update from the hospital or from home if I race home for a quick shower. Off to finish packing...

Just a quick update here, since I have a brief respite from husband and kids this evening—they are swimming and having dinner with the grandparents, while I am home alone, eating leftover tacos. But don’t get me wrong-- I’m thrilled with this mini-break!

Anyway, Dr. T called this evening right as I came in the door from work. Nothing like trying to have an intelligent discussion about your daughter’s life-threatening disease when you are sweaty, out-of-breath, having to pee, and haven’t even set down the mail yet.

But I digress…Pete had called him, asking if Ivy could be admitted Thursday instead of Friday, which for some reason is better for Pete’s schedule. It doesn’t really make much of a difference to me. But anyway, Dr. T said if her counts are good tomorrow, then yes, she can be admitted on Thursday. That means, if all goes as planned, we’ll be discharged Sunday.

He asked how she was doing, so I told him her bloody stools haven’t abated (though she did have a record-breaking five hours yesterday without a poopy diaper!). Of course, just like Dr. Hastings, he said it’s too soon to see results.

Other than that though, Ivy seems to be doing well. Her weird rash has not come back, her appetite is normal, and she’s happy. She and Jasper are getting over mild summer colds, while mine is just beginning. I can’t complain too much, though. It doesn’t even compare to what Ivy and so many other children are facing.

I know I could have made this about two paragraphs shorter, so thank you for indulging my ramblings….

Until next time,
Love Allyson, Pete, Jasper and Ivy

Thursday, August 4, 2005 4:46 PM CDT

There’s never a dull day in the life of Ivy Schoenberger, that’s for sure! On Tuesday morning, she woke up with an odd rash. Not to worry, it was very different from the LCH rash. This one consisted of wide, red swaths across her lower belly and upper thighs and then a few red spots, kind of like mosquito bites, scattered here and there. It didn’t seem to bother her.

I wasn’t too worried for a couple of reasons—1) kids get rashes all the time; and 2) it looked remarkably similar to a rash that our LCH friend Patrick had (and we just saw him on Thursday). His was biopsied to check for LCH and came back negative (thank goodness!), but they never determined what it was. It made sense to me that one immune-compromised kid could pass a viral rash to another immune-compromised kid without either of their siblings being affected. This theory would explain Ivy’s high (for a kid on chemo) ANC on Monday.

Anyway, by the middle of the morning yesterday, the rash was bothering Ivy so off to clinic she went, where they gave her Benedryl. Now she’s had three doses of Benedryl and the rash appears to be completely gone. Might have been an allergic reaction to something (though yesterday’s bloodwork doesn’t bear this out) or a virus (makes more sense to me).

Her diaper rash, however, is worse every day. And her stools are not the least bit improved either. It’s really hard to wait and wait and wait. I just wish we could hurry up and be done with the next cycle of 2-CDA so we can see if we need to switch to another therapy ASAP.

Okay, I know it’s not the most exciting update, but I also use this site as kind of a log of Ivy’s various symptoms, ailments, appointments and medications. Ugh. For a 13-month-old. How sad is that?

Anyway, thank you all for the supportive messages in the guestbook. They mean a lot!

Love Allyson, Pete, Jasper and Ivy

Monday, August 1, 2005 7:54 PM CDT

Well, we certainly chose the perfect day to show up at clinic without an appointment—it was practically deserted! They told us that this was very unusual for a Monday morning. Normally it’s hopping after the weekend.

I brought Ivy’s Aunt Beth with me, for moral support, in case I had to be pushy in order to see a doctor. But there was no need for that. They ushered us right in and we saw Dr. Hastings, whom we had not met before. She spent lots of time with us and basically said it’s too soon to expect results from the 2-CDA (though admitting they don’t use it very often and thus don’t have extensive knowledge of it).

Ivy is not dehydrated and she hasn’t lost weight (but she hasn’t gained in a few weeks either). We may end up seeing a gastroenterologist and a nutritionist in the next couple of weeks to ensure that she doesn’t start losing weight.

They did a CBC also and her counts are fine. What’s weird is that her ANC is 5000 (about normal, I think), when it should be lower than it was on Thursday. Her counts should be getting to the low point, instead of climbing back up. It doesn’t make sense and no one could explain it. A bit unsettling…

Anyway, it was a reassuring visit. Those docs at CHO are so good at that! I am glad we took her in—I feel relieved. Dr. Hastings said we MAY see results at the end of two weeks (we are at the end of one week now).

Then, after a quick lunch, we saw the ophthalmologist. Also a good visit. He doesn’t recommend the tear duct probe and said Ivy’s plugged ducts will definitely clear up by the time she starts kindergarten. As for the puffy red eyelids she experienced back in May and June, he said to shampoo her eyelashes. He practically guaranteed that if we do that, she will never have this eyelid problem again. Well, that’s nice to hear!

So overall, we had a good day in terms of medical news. I am sure I am leaving a lot out, but my kids are pestering me to go into the backyard to pick strawberries. So I’m off…

Thanks for checking in.

Love Allyson, Pete, Jasper and Ivy

Sunday, July 31, 2005 5:33 PM CDT

We are having a really difficult week. I can honestly say it has been the most gut-wrenching one of my life. Ivy’s symptoms have not resolved AT ALL (except for on Thursday when we were offered a glimmer of hope, only to have it snatched back the very next day). It is as though she was never treated at all. It feels like January all over again. She has constant bloody, mucousy diarrhea. Her food is not being digested. She screams with every diaper change, because the LCH rash is rearing its ugly head in that area.

Dr. T is on vacation this week, but I will call the clinic tomorrow morning and tell any doctor who will listen how bad it’s gotten. I can’t believe we just have to sit here watching our baby waste away until our next chemo treatment, almost two weeks away.

Ivy is also supposed to see the ophthalmologist tomorrow, but her tear duct problem is so minor compared to everything else that’s going on with her. I may not have the patience for that appointment.

Despite the 2-CDA, Ivy’s counts were good on Thursday: hemoglobin was 10.8, ANC around 1800, and platelets at 480.

One bright spot this week was finally getting to meet Patrick, another wee histio warrior. Jasper had a great time playing with him. There are pictures of the event on the photo page. We hope to see Patrick and his family again soon!

Sorry for such a downer of an update, but this is where we’re at. I have a wonderful group of friends who have tried mightily to cheer me up, but since I don’t want to embarrass anybody, I will just say a big thank you for the flowers and two wonderful gift certificates, one for food and one for a cleaning lady (or maybe it will be a man? No, that’s unlikely). You ladies know who you are and you are great!

Also I haven’t yet mentioned how great my work has been about Ivy and my needing to take time off, often at the last minute. That means more to me than words can say—it’s so nice to know I can concentrate on Ivy and not worry about my job. Thank you!

Maybe I will have more to update tomorrow. I sure hope things start to look up for our sweet girl. We are so worried.

Love Allyson, Pete, Jasper, and Ivy

Tuesday, July 26, 2005 12:39 AM CDT

Finally back home…Ivy is napping already at 10 am, because they woke her up at 6:30 to do the daily blood draw—for some reason we all struggle with her Broviac to get the blood out (makes me feel better that even the nurses have a hard time!). We ended up staying overnight last night because the chemo wasn’t finished until 2 am or so. It’s nice to be home in my messy house—no I.V pole trailing after my baby, free to go about as we please. Jasper will be home soon and Pete is itching to get back to work. Yes, even work is appealing after a 4-day hospital stay.

Yesterday was a really rough day, at least for me. I felt my hope diminish somewhat. It doesn’t help when Ivy has constant diarrhea, sometimes with blood. I feel like her insidious disease is mocking us—here she is hooked up to a powerful chemo drug and the LCH just goes about its business, as obvious (and oblivious) as can be.

No one, not even Dr. T, knows when her symptoms should start to resolve. But yesterday he pointed out that even at the 6-week interval, her symptoms had resolved, yet the GI scope showed active disease. I must admit, Dr. T wasn’t as reassuring yesterday as he normally is. One problem is that no one really has any experience treating GI LCH with 2-CDA, so he can’t tell us what to expect. I know of two children whose cases appear in the literature that fall into this category, and of course, we can’t know what their day-to-day experience was like. This is so frustrating!

Hospital stays are so difficult, even when you have the best bed in the house and your baby is happy and comfortable. We are constantly exhausted, worried, cooped-up, and in need of showers, food, and company. We were missing Jasper constantly and it was the highlight of each day when he arrived. It’s hard having a roommate, trying to be quiet when he’s sleeping, wishing with all your might that his guests will be mindful of when Ivy’s sleeping. So glad to be home….

We are scheduled to begin another 3-day cycle of 2-CDA on Friday, August 12, assuming Ivy’s blood counts are all fine. Every Thursday we will bring a blood sample down to the clinic. The nadir, or low-point, for the counts is expected to be 10-14 days after each cycle (I think).

Anyway, thanks to all those who made our hospital stay a bit more pleasant, bringing food and cheer to us. Adria, your visit on Saturday was like a breath of fresh air! And Pam, the balloon bouquet (and dark chocolate!) really helped cheer me up (though I cried upon first seeing it). It’s so nice to know that people care and are thinking about us. As always, thanks to the Schoenbergers, DeZeregas, and Levines for bringing food and keeping Jasper happy!

Also, it’s been a rough week for many histio warriors out there—please keep Patrick, Logan, Aidan and Lindsay in your thoughts and prayers. Lindsay is a girl about Ivy’s age, very recently diagnosed with skin and GI LCH. I have been trying to offer hope and information to her mom via email, but it’s difficult when I don’t have such good news about Ivy right now.

Anyway, that’s enough. I will keep you all updated about Ivy’s counts, etc. Thank you all for the kind messages via email and in the guestbook.

Love Allyson, Pete, Jasper, and Ivy

Saturday, July 23, 2005 7:28 PM CDT

Well, okay, it's going pretty well, actually. Ivy is feeling good and we have a prime spot on the hem/onc ward-- the window side of one of the bigger rooms. We didn't start off there, but Ivy's roommate was moved to the ICU shortly before bedtime. Then, get this, at 2:30 am, the nurses woke us to tell us to move to the window side. Before daybreak we had a new roommate. It's packed to the gills there at CHO.

So we were admitted around 6 pm, had a nice long chat with Dr. T around 7:30, Ivy's fluid drip was started at 8, chemo at midnight.

I have to say Dr. T gets an A+ in bedside manner. He is just so reassuring, so calm, so engaged with Ivy. He put in a really long day so that he could speak to us before he went home.

So Ivy is getting a 72-hour continuous infusion of 2-CDA. Then, immediately after that, at midnight on Monday/Tuesday, we are free to go home. Since it's such a short drive, we probably will do just that. Anyway, previously Dr. T had said it would be a 2-hour infusion for 5 days, but he did a quick bit of investigating before we checked in and found that the 72-hours is more effective. He also said he has successfully treated LCH with 2-CDA once before, so that's good. He said Ivy's biggest side effect will definitely be lowered blood counts, but not much else except hair loss. They do give Zofran, an anti-emetic, along with the 2-CDA, so I guess it usually causes nausea also.

We will do 2 cycles of 2-CDA then probably re-scope Ivy's GI tract to see that it's actually responding. Then, if it is, we will do a few more cycles just to be safe. If it's not, well, I don't want to go there.

We are feeling good about this treatment plan. I have a couple of articles that report good response with 2-CDA. It's not chemo-"lite" like the Vinblastine was, but not as hard-core as many other types out there. Let's just hope it works!!

Ivy is charming everyone she meets at CHO, doctors, nurses, custodial staff, and other patients. She is the tiniest patient on the floor, but she's got the brightest smile!

Anyway, I'm home for a quick shower, then off to pick up Jasper to bring him to see his sister (she misses him and so do I!).

I hope to only have positive updates from here on out!
love A

Thursday, July 21, 2005 10:41 AM CDT

**SECOND UPDATE**
I just got off the phone with Dr. T and he said Ivy will be admitted tomorrow to start her new therapy, a chemo drug called 2-CDA. He said the pharmacy won't have it ready until tomorrow.

The 2-CDA regimen is an continuous IV drip--we will be in the hospital 5 days each time, every 3-4 weeks, for 4-6 weeks. Dr. T said more than half have a good response and of those, 66-75 percent have a complete response with no relapse.

He also said 2-CDA will have more of an impact on her blood counts than the other drugs she's been on. Her white cell count will be low, making her susceptible to infection and she will likely need transfusions (of red blood cells, I presume).

So that's where we're at. It seems bleak, but at least we have a plan. Thanks for checking in and please keep those prayers and positive thoughts coming. Okay, to cheer you up, how about I share a cute Ivy development? She now says "cheese," but in the most unusual way ever-- I can't even spell it phonetically. Try this: set your mouth up to say "ch," then smile and blow air through your cheeks. That's how she says cheese. And it's one of her favorite foods. Cheddar only, though.

I'll try to update from the hospital, or maybe one of us will come home at some point during the five days.

love, A, P, J, and I

**UPDATE**
They are admitting Ivy to Children's Hospital today. We came home after our clinic visit because they don't have a bed on the Hem/Onc floor for her yet (how sad that Children's Hospital is always full to the max). How lucky for us that we live 10 minutes away.

We didn't see Dr. T, but Drs. Golden and Chang consulted with him and it was quickly decided to admit her and start more aggressive therapy. Tonight and tomorrow will likely be filled with endoscopy, MRI, xray, etc. Ivy will probably start either methotrexate or 2-CDA, depending on what some other LCH docs around the country advise.

We will likely be in the hospital through the weekend. We are having to cancel our trip to Lake Tahoe, but that's a minor inconvenience.

This is extremely upsetting news and not what we were expecting to hear today (more aggressive treatment, yes, but immediate hospitalization, no). However, I am happy that the doctors quickly decided to be more aggressive instead of wait-and-see mode. I guess this is serious.

Please, please keep Ivy in your thoughts and prayers. We are hoping that this next treatment works and that it's not too hard on our sweet baby girl.

I don't know what computer access is like at the hospital, but I will try to update from there.

love, A, P, J and I

This will be just a brief bad-news update, then later today, after our appointment with Dr. T, I will add more.

Last night Ivy had bloody, mucousy diarrhea, just like she was having all last winter. She'd been having diarrhea more and more frequently this week and last, but back then we still had a glimmer of hope that it was just a virus of some type. Not now.

It's very scary that the disease is rearing its ugly head RIGHT AFTER she had her Vinblastine and prednisone pulse. I think our only option is to add another drug to her regimen and I'm terrified of that.

Last week I emailed the doctor from CHLA and she got back to me the same day. She said if it was just Ivy's skin that was flaring (at that time we thought it was), then she'd recommend doing the vinblastine and prednisone every week or every other week, rather than every three. But she also said if Ivy's GI symptoms come back, she would recommend starting methotrexate. Ugh ugh ugh. She also said she would be glad to talk to Dr. T so I will put him in touch with her today.

I'll update more later--got to get Jasper ready to go to Grammie's and Ivy ready to meet Daddy at clinic at 11.

Until then,
love Allyson, Pete, Jasper and Ivy

Thursday, July 14, 2005 2:47 PM CDT

Yesterday was Ivy’s second clinic visit since she started continuation therapy. Unfortunately, the day before, her skin started flaring; the rash behind her ears got so bad she was scratching it until it bled. Also her diaper area looks a bit inflamed. Of course, it could be normal diaper rash or a yeast infection (not uncommon in diaper-wearing kids), but I think not. It looks like LCH to me. She’s also had two bouts of diarrhea this week. It’s nothing like the diarrhea she used to have, but it still alarms us. Of course, lots of people get diarrhea from time to time, with no obvious cause, so we can’t be certain it has anything to do with LCH. We fervently hope not.

We didn’t see Dr. Torkildson yesterday as he was on the inpatient rotation. We saw Dr. Golden, whom we had never met before. I liked her. The first thing she said was, “So this is Ivy! I’ve heard all about you, Ivy!” I guess Ivy is a bit of a celebrity there, having such a rare manifestation of such a rare disease.

Anyway, Dr. Golden did a thorough exam, but of course said Dr. T would be the one to make any decisions. That’s good, but I don’t understand how they rotate the docs through clinic, inpatient and day hospital. It seems whenever we have a pressing need to talk to Dr. T, we have to see someone else! Nurse Cynthia pointed out though, that Dr. T is very good about making time to meet with his patients if it’s crucial. She’s right; he’s been paged from both inpatient and the day hospital to meet with us. So next week he’s not scheduled to be in clinic all week, but we have an appointment with him Thursday morning!

I’m assuming he will make a decision about whether we need to get more aggressive with Ivy’s treatment, either by continuing the weekly chemo for awhile longer or incorporating a new drug into the regimen. Of course, I don’t want Ivy subjected to a new drug with new (and likely worse) side effects. I am planning to email the doc at Children’s Hospital L.A. to get her input.

Ivy’s blood counts are mostly fine this week: her platelets are almost back down to a normal level (408) and her sedimentation rate (marker for inflammation) is just slightly elevated. What this means, well, your guess is as good as mine. Everything else is fine, which means that she’s tolerating the 6-MP well (at least in terms of her blood!). However, we think she may be having other side effects. She’s not sleeping as well and I’m wondering if the 6-MP is making her not feel well (we give it right before bed). Dr. Golden said she hasn’t heard of that with 6-MP, that usually patients tolerate it very well, but she also said she would never say never.

Ivy’s also up to a 100% dose of the Vinblastine, now that she’s past her first birthday. Yesterday after her treatment she didn’t seem well at all, very tired, droopy and cranky. I hope it doesn’t get any worse—we still have 8 months left of treatment, MINIMUM.

We also have an appointment with a pediatric ophthalmologist on August 1. I don’t know if they will do the tear duct probe then and there or if that will come later. But she will have her pupils dilated, poor thing.

Lest you think I only have bad news to share, I’d better include a few good things in the update as well: we had a surprise 40th birthday party for Pete on Saturday. He wasn’t terribly surprised, but a good time was had by all anyway! We ate tamales and birthday cake and drank margaritas poolside. Then most of us swam. A perfect summer afternoon… Also, my new stove arrived this morning! I’ve never had a brand new major appliance and I am excited! The PG&E man is coming out this evening to hook up the gas.

Also, Katie’s dad estimates that her birthday donations netted about $800 for the HAA. Thank you, Katie! Have fun at Disneyland!

And lastly, on Tuesday evening I took the kids to the park to meet Jasper’s favorite friend Felix and a butterfly alighted on Ivy’s head FOUR times. It actually spent a good minute or two just resting there. I don’t believe in omens, but if I did, I’d have to say this is a good one!

Wish us luck-- we’re enduring Prednisone week and it’s no fun for anybody except Ivy, who seems to get a little high from it. She gets excited when she sees the syringe coming.

I added some new photos--check them out. As always, thanks for checking in...
Love Allyson, Pete, Jasper and Ivy

Thursday, July 14, 2005 2:32 PM CDT

Yesterday was Ivy’s second clinic visit since she started continuation therapy. Unfortunately, the day before, her skin started flaring; the rash behind her ears got so bad she was scratching it until it bled. Also her diaper area looks a bit inflamed. Of course, it could be normal diaper rash or a yeast infection (not uncommon in diaper-wearing kids), but I think not. It looks like LCH to me. She’s also had two bouts of diarrhea this week. It’s nothing like the diarrhea she used to have, but it still alarms us. Of course, lots of people get diarrhea from time to time, with no obvious cause, so we can’t be certain it has anything to do with LCH. We fervently hope not.

We didn’t see Dr. Torkildson yesterday as he was on the inpatient rotation. We saw Dr. Golden, whom we had never met before. I liked her. The first thing she said was, “So this is Ivy! I’ve heard all about you, Ivy!” I guess Ivy is a bit of a celebrity there, having such a rare manifestation of such a rare disease.

Anyway, Dr. Golden did a thorough exam, but of course said Dr. T would be the one to make any decisions. That’s good, but I don’t understand how they rotate the docs through clinic, inpatient and day hospital. It seems whenever we have a pressing need to talk to Dr. T, we have to see someone else! Nurse Cynthia pointed out though, that Dr. T is very good about making time to meet with his patients if it’s crucial. She’s right; he’s been paged from both inpatient and the day hospital to meet with us. So next week he’s not scheduled to be in clinic all week, but we have an appointment with him Thursday morning!

I’m assuming he will make a decision about whether we need to get more aggressive with Ivy’s treatment, either by continuing the weekly chemo for awhile longer or incorporating a new drug into the regimen. Of course, I don’t want Ivy subjected to a new drug with new (and likely worse) side effects. I am planning to email the doc at Children’s Hospital L.A. to get her input.

Ivy’s blood counts are mostly fine this week: her platelets are almost back down to a normal level (408) and her sedimentation rate (marker for inflammation) is just slightly elevated. What this means, well, your guess is as good as mine. Everything else is fine, which means that she’s tolerating the 6-MP well (at least in terms of her blood!). However, we think she may be having other side effects. She’s not sleeping as well and I’m wondering if the 6-MP is making her not feel well (we give it right before bed). Dr. Golden said she hasn’t heard of that with 6-MP, that usually patients tolerate it very well, but she also said she would never say never.

Ivy’s also up to a 100% dose of the Vinblastine, now that she’s past her first birthday. Yesterday after her treatment she didn’t seem well at all, very tired, droopy and cranky. I hope it doesn’t get any worse—we still have 8 months left of treatment, MINIMUM.

We also have an appointment with a pediatric ophthalmologist on August 1. I don’t know if they will do the tear duct probe then and there or if that will come later. But she will have her pupils dilated, poor thing.

Lest you think I only have bad news to share, I’d better include a few good things in the update as well: we had a surprise 40th birthday party for Pete on Saturday. He wasn’t terribly surprised, but a good time was had by all anyway! We ate tamales and birthday cake and drank margaritas poolside. Then most of us swam. A perfect summer afternoon… Also, my new stove arrived this morning! I’ve never had a brand new major appliance and I am excited! The PG&E man is coming out this evening to hook up the gas.

Also, Katie’s dad estimates that her birthday donations netted about $800 for the HAA. Thank you, Katie! Have fun at Disneyland!

And lastly, on Tuesday evening I took the kids to the park to meet Jasper’s favorite friend Felix and a butterfly alighted on Ivy’s head FOUR times. It actually spent a good minute or two just resting there. I don’t believe in omens, but if I did, I’d have to say this is a good one!

Wish us luck-- we’re enduring Prednisone week and it’s no fun for anybody except Ivy, who seems to get a little high from it. She gets excited when she sees the syringe coming.

As always, thanks for checking in,
Love Allyson, Pete, Jasper and Ivy

Tuesday, July 5, 2005 7:34 PM CDT

Just the briefest of updates here...

Ivy went back to her pediatrician after dutifully taking her Augmentin for 10 days. Yuck. We won't be doing that anytime soon (the Augmentin, I mean), unless it's absolutely warranted.

He said her right ear still looks a little funny to him, not infected, but funny. He will see her again in September for her 15-month "well" baby check (ha!) and then decide if she should be seen again by the Ear/Nose/Throat guy. It might just be a problem of too much wax, so he's not able to get a good view.

Regarding her eyes, we have a referral to a pediatric opthalmologist. She hasn't had the red eyelid problem, nor any gunky discharge for a couple of weeks now, but she still has some drainage issues, off and on. So, they'll probably do a probe, where they insert a glass needle into her tear duct to clear it out. Supposedly a very simple procedure... This problem does not appear to be related to LCH, thank goodness.

That's about as short an update as I'm capable of, I believe. Ivy is cuter than ever, saying lots of words, which all happen to start with "B." Even some words that don't begin with "B," like Jasper and strawberry, come out of her mouth with a B sound. It's a special Ivy trait and we love it.

Ivy's trying to help me type now, so I must close...

Until next time,
love Allyson, Pete, Jasper and Ivy

Thursday, June 23, 2005 1:12 PM CDT

Here’s another jumbled update for you… a lot has been going on, some good, some bad. I will try to be organized in my thoughts. Put your feet up, grab a cup of coffee—it’s a long one.

IVY’S UPDATE: Yesterday Ivy started continuation, aka maintenance, therapy. What this means is that she has 1 week “on,” with vinblastine and prednisone, then 2 weeks “off,” with no vinblastine or prednisone (it will be strange to not have to go to clinic every single week!). But she is also starting a new chemo drug, called 6-MP, that she takes orally at home every single night until March—if everything goes as planned.

Unfortunately, a day or two before she started continuation her skin started flaring a bit. We think she may have a couple new lesions on her shoulder, as well as some redness in her diaper area. Yes, these are very subtle signs to watch for, but they throw us into a panic. Dr. T’s opinion of the shoulder spots: we have no idea what they are or if we should be concerned. True, on a normal kid you might not even notice them at all. His opinion of the diaper area: Yes, it’s concerning, but kids in diapers often have skin issues. Where does this leave us? We don’t know! The doctors don’t know!

The other issue that’s been plaguing Ivy is her eye/ear stuff. This is getting so complicated I can’t even get it all in writing. Basically, she’s had four eye infections since early May, first diagnosed, sight unseen, as pink-eye. So we applied antibiotic drops and it went away. But then it comes back again. It’s not pink-eye. Her eyes themselves remain perfectly white, but her upper eyelids get bright red, like the worst sunburn you’ve ever seen, and sometimes they swell. She also has lots of gunky discharge. The doctors agree (pediatricians and oncologists alike) that it’s not a side effect of the chemo. They agree that it’s not LCH (I still have my doubts). It’s probably not an allergic reaction. It could be related to her plugged tear ducts (something very common in newborns, usually resolves long before the first birthday—we thought Ivy’s resolved right before she started chemo, but maybe not).

Then her pediatrician thinks she has an ear infection, as does the on-call pediatrician we saw over the weekend. But Dr. T thinks not. Dr. Feusner seemed to think not as well. We have the option of going back to Dr. Wesman, the ear/nose/throat guy at Children’s for a tiebreaker. We may do that. Also ear problems, frequently misdiagnosed as infections, are a common presentation of LCH, though it would be unusual for it to happen now, after 12 straight weeks of chemotherapy. But evidently it is also not unusual for eye infections and ear infections to go together, so we are experimenting with a round of Augmentin, a common, but powerful antibiotic. I hate giving it to her; she hates taking it, it causes diarrhea, and I am one of those people who is anti-antibiotic (yes, I know it’s a wonder-drug, but giving unnecessary antibiotics is a big no-no in my book—it sure does a number on one’s system).

So Ivy is now taking six medications at home. Some are to be taken with food, some on an empty stomach. Some are to be stored in the refrigerator, some are not. One is to be taken every day for nine months, one twice a day for 10 days, 2 twice a day for 5 days, one twice a day on weekends only. And on and on and on. It’s confusing, obviously. I think we may have to start using a chart. Poor Ivy.

UPDATE FROM THE INFORMATIONAL MEETING AT CHILDREN’S HOSPITAL LOS ANGELES: This was a great meeting! The doctor hosting it was young (maybe even my age—not young per se, but quite young to be an expert in the field of histiocytosis), warm and extremely knowledgeable. She gave a presentation and then allowed plenty of time for questions. There were approximately 12-15 families represented. I asked her about GI involvement, because she didn’t mention it in her talk at all. The first thing she said is that it’s extremely rare, the second was that it’s an indicator of a poor prognosis. Ugh. Of course, we know that, but to hear it spoken so clearly was unnerving. But she reiterated that the six-week response to treatment is also a very important indicator, and as we all know, Ivy’s was excellent. So we have good prognostic indicators and we have bad. We knew this, of course.

I also asked her about high platelets and she said this would be an indication of inflammation, therefore active disease. But then I pointed out that Ivy’s sedimentation rate is normal (don’t ask for a technical explanation—basically sed rate is non-specific marker of inflammation) and she acknowledged that the high platelets could be due to something completely unrelated to LCH (what this means is that she doesn’t know—what a surprise!).

Anyway, it was a good meeting and I’m glad we were able to go. It was nice talking to other families and even meeting one kid, now 23, who has survived three recurrences of the disease. On a sad note, I met a mom whose 2-year-old daughter died from LCH, and she had, you guessed it, GI involvement. I wish I had more details of her story, but I don’t.

UPDATE ON VERY GENEROUS PEOPLE: I work with a guy who lives not too far from us and he has a daughter, Katie, who is turning 7 on 7/7. Katie has never met Ivy, but she told her parents that instead of birthday presents at her party this year, she wants people to donate in support of research for Ivy’s disease. I am so touched and in awe of such a generous little girl—I have a feeling she is meant for big things in life. We are taking her up on her offer and are hopeful that Katie’s seventh birthday will bring in some big bucks for the HAA! By the way, Katie’s parents appear to be touched and in awe of their daughter’s generosity as well, and are rewarding her with a surprise trip to Disneyland! Good for you, Katie, you deserve it!

So that’s our long update for this week. Like I said, some good, some bad. And a heck of a lot of unknowns. We’re getting used to it.

Take care and we love you,
Allyson, Pete, Jasper and Ivy

Thursday, June 16, 2005 3:03 PM CDT

Yes, Ivy’s one! I have to admit, that when we first received her diagnosis, four long months ago, I wondered if she’d even see her first birthday. That sounds a little melodramatic, I know, but her situation sounded so dire when I read in article after article how poor the prognosis is for babies under one year.

But here she is—a cute, chatty, almost-walking, toothy one-year-old! We had a birthday party last night, a fun family affair, with too much cake and too many presents (from my perspective, not Jasper’s—he made out almost as good as the birthday girl!). Aunt Beth made the cake, because, despite my grand intentions of bringing cupcakes to clinic and baking a birthday cake for the party, our oven broke on Tuesday night. The door, which had always given us grief, will not stay closed now. So bye-bye, oven. No cupcakes for clinic, but we did have a fabulous cake for the party, thanks to Auntie Beth.

And speaking of clinic (that’s what this site is all about, right?), it was mostly a non-event. Ivy is so popular there that the nurses always greet her by name and yesterday they passed her from person to person. To my surprise, she didn’t object and happily soaked up their adulation.

For the second week in a row we didn’t see Dr. T. He is on vacation this week, moving to a new house, evidently. I thoroughly respect that he is allowed to have a personal life (he has four daughters, by the way!), but I wish it wasn’t during this week of transition for Ivy. Yesterday was her final week of weekly chemo; now she goes to maintenance, so we’ll go to clinic every three weeks for the vinblastine and start a new chemo drug called 6-MP (mercaptopurine, I believe). It’s oral and she’ll take it every single day until the end of treatment which will probably be in March.

There’s really no question of whether or not Ivy will proceed to maintenance—she’s classified as either NAD (no active disease) or AD-better (active disease-better), so the protocol says off to maintenance we go! I just wish Dr. T had been there to spell out how the next phase will progress. At this point we don’t even know if Ivy needs an appointment next week. It’s not a big deal, I guess, but I just don’t like the unsettledness of it all.

Anyway, she’s really doing well, other than being very fussy this morning (why, I don’t know—maybe this is part of her new one-year-old persona. Eek).

Oh yes, one other side note: Pete and I are going to L.A. tomorrow for an LCH meeting at Children’s Hospital Los Angeles. I am lucky enough to be able to combine it with a work trip. Jasper and Ivy are having a sleepover with Grammie and Grandpa (good luck, guys!). I am looking forward to the meeting, but what Pete and I are most excited about is watching cable TV in bed at the hotel! Oh, the things we took for granted pre-kids.

Thank you to Nana, Gramma, and Aunt Debbie who sent birthday packages in the mail. It was fun finding a new package on our porch every day this week! Thanks to everyone who came to Ivy’s birthday party and helped make it special. And a big thank you to Dr. T and Children’s Hospital Oakland for even making her birthday possible. There I go sounding melodramatic again, but I really believe if Ivy hadn’t started treatment when she did, she’d either not be with us today or be very, very ill at this point. Thank goodness for chemotherapy! That is said partially tongue-in-cheek, but it does seem to be working for our birthday girl.

Thanks to another of our dear friends for making a birthday donation to the Histiocytosis Association of America. The HAA has been so helpful to us as a family, but also has been instrumental in pushing research forward--so very necessary with such an underfunded and devastating disease. Where would we be without the HAA?

I've added a new link down below where you can read about Logan, a boy from Florida fighting LCH. Also, check out the photo album--there are some birthday pictures there.

Thank you all for checking in again this week. If there’s anything interesting to report from the meeting at CHLA, you will find it here. Take care, everyone and to all the dads out there, have a wonderful Father's Day!

Love Allyson, Pete, Jasper and Ivy

Thursday, June 9, 2005 12:22 AM CDT

It seems everyone expects an update after Ivy’s weekly appointments, even if nothing much has happened, so I will oblige.

She’s doing great! Her skin looks almost perfect, just a bit of hyperpigmentation from her old lesions. It is fading each week though. She’s not itchy and her diaper area looks like every other one-year-old’s. No weight gain this week, but that’s okay—she’s holding steady at 15 ½ lbs. Ivy’s height is creeping up ever so slowly, thanks to those petite Corbett genes. She’s slightly over 26 inches (this is how long Jasper was at 6 months old). She is just now growing out of 3-6 month size clothing.

Ivy did have a visit to her pediatrician on Monday, to see about her third eye infection in the past month (no, wait, that sounds funny—it’s not an infection of her third eye, but rather the third infection of her eyes she’s had this month!). Over the weekend, her eyelids were bright red and swollen and she had a lot of gunky discharge. Of course, by the time Dr. King saw her, they looked much, much better. Nonetheless, he prescribed Augmentin, an antibiotic. He thought maybe she had a combo eye/ear infection (evidently they can go together and he always thinks Ivy’s ears look odd). But her eyes looked so much better on Tuesday that I didn’t fill the prescription. Today they look normal.

We didn’t see Dr. T at clinic yesterday. I was very disappointed when I saw Dr. Feusner popping in from room to room. Not only do I really like Dr. T, I appreciate the continuity of care we receive. I like that he can gauge Ivy’s response from week to week and is slowly getting to know us as a family. But then, after a few minutes with Dr. Feusner, I understand the benefits of a new perspective every now and then. Dr. Feusner thinks Ivy’s high platelet counts (this week they are at 673—high, but nothing to be worried about) are indeed from the chemo. At first he thought her high platelets could be indicating more active disease, but then, after noting that they weren’t terribly high before she began treatment, decided that that hypothesis doesn’t pertain to Ivy.

I told Dr. Feusner about Ivy’s eyes and he seemed to think that it could be related to her plugged tear ducts—something she’s had since birth, but cleared up right before chemo started. It’s not uncommon; Jasper had it too and it went away on its own, long before he turned one. Dr. Feusner thinks maybe she needs to see a specialist (yet another one).

My point: It is becoming quite evident that much of medicine is an art, and not so much a science. Every doctor seems to have his own opinion when it comes to Ivy’s ears, eyes, platelets, etc. I suppose under different circumstances this would terrify me (why the heck don’t they know what’s going on?!), but since my mother’s intuition tells me that Ivy is doing well right now, I don’t worry so much. These doctors are smart, educated, and open to new ideas, so I guess that’s all I can ask. There are no simple answers.

I also found out that Ivy is no longer the only LCH patient at CHO (that’s Children’s Hospital Oakland, by the way). They are now treating a 19-year-old girl who was first diagnosed at age 17, but somehow neglected to follow up on treatment. Like Ivy, she has bowel involvement, which as you may recall from my earlier posts, is extremely rare. According to Dr. Feusner, it is almost unheard of in someone her age; most with gastrointestinal involvement are babies and toddlers. She is undergoing the same treatment as Ivy and is responding well.

Anyway, we are doing well this week. Jasper doesn’t get much attention in these posts, I realize (lucky him, he doesn’t have a potentially fatal disease!), but he deserves a nod of recognition for being a patient and loving big brother. Someone at a picnic over the weekend had never met him before and described him as “fetching.” So that is Jasper’s update: he is fetching. Indeed he is.

Thanks for checking in on us week after week. We truly appreciate it and especially love reading the guestbook entries. Keep ‘em coming!

Love Allyson, Pete, Jasper and Ivy

Thursday, June 2, 2005 1:21 PM CDT

Just a quick little update about Ivy’s platelet count and her appointment yesterday:

Her platelet count is down, to 686. That’s still high (remember the normal range is 150-400), but nobody is too concerned. Also, since I posted last week, I have been in touch with another mother whose son’s platelets are always high—he has the same diagnosis and is getting the same treatment as Ivy. His doctors at Stanford are not worried either. No one seems to know what causes it.

Ivy’s neutrophils are back up as well, so we don’t have to be as vigilant about her getting sick—she’ll be better able to fight off germs.

Overall it was a very good appointment. Ivy’s skin looks good, better than last week and her weight is slightly up, to about 15.5 lbs. And she was in a great mood, giggling when Dr. T listened to her heart and palpated her abdomen, smiling as Nurse Cynthia administered the chemo.

She’s a crawling fiend now, moving from one room to another faster than I can keep up with her. Time to babyproof—again! She holds on to the coffee table and walks around and around and around it, always clockwise for some reason. She is really starting to look and act like a one-year-old, which she will be in less than two weeks!

I just added some new photos to the photo page (and even resized them for your viewing pleasure). Check them out!

It’s a beautiful summery day here and we are off to enjoy it! Until next time,

Love, Allyson, Peter, Jasper and Ivy

Friday, May 27, 2005 7:16 PM CDT

Yesterday was week 9 of chemo for Ivy. She’s doing well for the most part, and actually LIKES taking her medicine (Prednisone, Zantac, and Bactrim) at home. At clinic, she smiles when they take her vitals, or at the very least, doesn’t carry on like she’s being tortured as she did a few short weeks ago. She’s a chemo baby and takes it all in stride!

This week her platelet counts are up, quite high, actually. Normal is between 150,000 and 400,000 (shorthanded to 150 and 400), but Ivy’s were 1000. The automatic blood cell counting machine (I’m sure there’s a name for it, but I don’t know it!) came up with this number on Tuesday, so yesterday they retested and counted manually. Usually they do all of Ivy’s bloodcounts manually (that’s a job I would never want; sounds pretty tedious). But her manual count came back high as well, around 800.

It doesn’t make sense, because Ivy’s chemo drug, vinblastine, suppresses bone marrow activity, thus limiting development of new blood cells (red, white, and platelets). From what Dr. T explained and from what I read on the internet today (where would I be without that?), you’ll get a high platelet count for two reasons: either you are making too many of them or your spleen is not taking enough of them out of circulation. But, like Dr. T said, her bone marrow shouldn’t be making too many. So, this leaves us with the spleen theory, which of course, started me worrying. Could she now have LCH in her spleen? Dr. T said no, he palpated her spleen, as he does at every visit, and it feels totally normal. He offered another couple bits of info regarding Ivy and her spleen, but as I was nursing (this seems to deplete brain cells instantly) and keeping Jasper in check (though he was actually very, very good), I wasn’t able to note everything he said.

He said not to worry and that we’ll recheck it next week (as we do every week anyway). Then, if it’s still so high, maybe we’ll do an ultrasound to look at her spleen. He also said her platelet counts had been high a couple other times, but not this high. I need to compare all the printouts of Ivy’s counts that we’ve dutifully asked for each week, then barely glanced at. I do remember that in the hospital the night she started chemo, her platelets were slightly high, around 500. Nobody was too concerned.

And then, as we were leaving, Dr. T mentioned that her Absolute Neutrophil Count (ANC) is 750, so be sure to watch out for fever. Neutrophils are a type of white blood cell and if your ANC is low, your body is less able to fight off infection. When your ANC is less than 500 you are neutropenic and basically shouldn’t leave the house, for fear of deadly germs. Sometimes we see kids at clinic wearing surgical masks—they are neutropenic and are trying to protect themselves against infection, since their bodies would be extremely challenged in fighting it off. Neutropenia is a very common side effect of chemotherapy.

Anyway, there’s your Hematology 101 lesson for the week. This is complex stuff that I find very interesting—to a certain point. I’m just glad there are people like Dr. T who know it inside and out (no pun intended).

So, despite unusual (or “unusuable” as Jasper says) blood counts, we can still say Ivy’s doing well. Yesterday she crawled for the first time. Or at least the first time that I actually witnessed—she can somehow move from one spot to another six feet away very quickly. But this was legitimate crawling, albeit very rudimentary, involving a bit of leg-dragging. But, it worked! Jasper and I cheered and Ivy beamed back at us proudly.

My kids are great!

Love Allyson, Pete, Jasper and Ivy

Monday, May 16, 2005 7:16 PM CDT

After having a wonderful time at A Night of Hope fundraiser on Saturday, and being so impressed by how fun, organized and successful it was, I want to share a bit about how research for histiocytosis gets funded. As I understand it, the federal government provides $0.00; that’s right, nothing.

Histiocytosis is considered an “orphan” disease, because it is so rare and thus, overlooked when the feds are determining who gets funded and who doesn’t. Yes, that makes sense when you consider that if you didn’t know the Hitts and Schoenbergers you would most likely never meet someone suffering from this disease. Why spend money on something that so few people will encounter? But, my gosh, when it’s your child who’s been diagnosed with it and has to have multiple surgeries and chemotherapy for who-knows-how-long and it might not even work, you want money to be thrown at research to discover the cause and cure for the disease. You want your baby to live and you don’t want her to suffer any more than she already has.

So, when a family is stricken by this little-understood, but life-threatening disease, they try to raise money themselves. That’s how histiocytosis research is funded--by families.

Pam and Tom Sanger, the parents who hosted A Night of Hope, have impressed me to no end by their energy and devotion to the cause. They attempted to raise $40,000 for the Histiocytosis Association of America, which besides offering wonderful support and information to families, funds research grants. I have yet to hear how much exactly was raised on Saturday night, but it surely seems they met their goal.

Anyway, I am jumping on their bandwagon and imploring you to donate to help find a cure for Ivy’s disease. You can still donate through A Night of Hope and you can specify that it’s in honor of Ivy Schoenberger. Here is the website: http://www.anightofhope.com/HowCanIHelp.htm

Or you can donate directly to the HAA (also specify Ivy Schoenberger): http://www.guidestar.org/controller/searchResults.gs?action_donateReport=1&partner=networkforgood&ein=22-2827069

Another option is to contribute to Teresa Bogstad’s Fund at http://www.cs.tufts.edu/~cowen/tmb/
This money goes to The Children’s Cancer Foundation and will go directly to Dr. Robert Arceci at Johns Hopkins to fund research for histiocytosis. Dr. Arceci is one of the two top histio doctors in the U.S.

We have deep gratitude to those of you who have already donated. And we are thrilled that Aunt Sara and Uncle David, as well as our dear friends, Ilana and Greg were able to come to A Night of Hope with us. We very much appreciate the donation to the cause, as well as the great company they provided us! Of course, our #1 babysitters, Grammie and Grandpa made our attendance possible.

Thank you, everyone, for hearing me out. Pete and I are profoundly grateful for the efforts of the Sangers and other families who are taking Herculean efforts to raise funds to fight histiocytosis. We are grateful that the HAA exists (as Pete said, it’s a terrible club to have to join, but thank goodness there’s a club!) And as always, we are grateful for the myriad offers of support from all of you that come our way.

As for Ivy, she’s doing great this week. For this, of course, we are most grateful.

Love Allyson, Pete, Jasper and Ivy

Thursday, May 12, 2005 8:31 PM CDT

Good news today: Dr. Torkildson called me at work to tell me about Ivy's biopsy results. While her colon is not normal, it is 90mproved! He said if they (he and the pathologist) didn't know she had LCH, they wouldn't be able to tell from the slides (meaning, I guess, that there just aren't that many Langerhan's cells there-- you really have to be searching to find them).

What Dr. T is recommending for Ivy's next course of treatment is just what I was hoping for: another 6 weeks of weekly Vinblastine. She will have Prednisone also, but instead of every day, like it was for the past 6 weeks, it will be Mondays, Wednesdays and Fridays. We are following the high-risk arm of the international LCH III protocol.

So, Ivy will have chemo tomorrow (Friday), then next week Thursday, then maybe another Thursday, then back to our regular Wednesday appointment. Her 12th chemo appointment will be on her first birthday, June 15th. I can think of better ways to spend a birthday, but there are worse ways also. She is very popular at clinic and it may be nice to spend a part of her birthday there. :-)

This has been a good week for us; let's just hope that the next 6 weeks of treatment will wipe out the disease completely and Ivy can go to maintenance.

Until next time,
love A, P, J, and I

Tuesday, May 10, 2005 6:09 PM CDT

About five days ago, Pete and I were lamenting the state of our lives, really hoping that this would be the lowest point. We had gotten less-than-encouraging news about Ivy and Pete's job offer, which had been so imminent for weeks, sounded like it was falling through.

Well, it's a new week now and things have turned around. Pete got the job. We are very pleased with the offer (we had been planning to give up our small luxuries--Peet's coffee, my expensive bread for my morning toast, movie rentals, but now we don't have to!). And Ivy had her sigmoidoscopy this morning and sailed through the procedure!

The whole thing, from the anesthesia being injected into her port, to when Dr. Gleghorn came down to get us in the cafe, was half an hour tops. And it was good news. The doctor saw no lesions and said Ivy looks totally normal. She took nine biopsies and we won't get the results until Thursday, but we are very hopeful that the chemo has conquered the LCH in Ivy's GI tract.

This was Ivy's fourth general anesthesia and the first one where she didn't throw up all over me. No vomiting this time, a very easy recovery. She woke up happy and stayed that way, especially after she was able to nurse for a good, long time. The poor thing hadn't had any nourishment for more than 14 hours.

So, for now, we wait to get the results on Thursday. This means no chemo tomorrow. The Prednisone has been tapered off completely, so lucky little Ivy gets to have one whole day with no meds!! Oh yeah, except for her antibiotic eye drops for the pinkeye she picked up somewhere.

It's amazing how a couple of happy incidents and a bit of good news can turn your life around. Today, we are happy!

Now for some of my ramblings...we, of course, spend a good deal of time at Children's Hospital. We see lots of sick kids. Sometimes it's obvious that they have health issues: a cleft palate, a bald head, an awkward, unusual gait, a cast or bandage-- big clues as to why they are there. Then there are the ones like Ivy who are robust, cheerful, so seemingly normal. People still don't believe she's sick! Maybe that's a good sign...? I don't know.

Then there are the parents. Today, a mother wiping away tears at the surgery clinic. Another one sobbing outside of the cafeteria. Others holding babies too tiny to be having surgery, MRIs, etc. (except sadly, they're not too tiny at all). I'm guessing that for them, this past Mother's Day was bittersweet, as it was for me. My first one with Ivy. As I told Pete, "I hope this is the worst Mother's Day I ever have!" Anyway, happy belated Mother's Day to all you moms out there! Mine was made special by my little family, of course, and also by all the others gathered at our house over the weekend. Great food, flowers and company! Thanks to the Schoenbergers, the Levines, the DeZeregas and the (one) Isaacs for all of the above.

I think I've covered everything. There will probably be another update on Thursday or Friday. Keep Ivy in your prayers and thoughts this week; we want it to be another positive update!

love Allyson, Pete, Jasper and Ivy

Wednesday, May 4, 2005 4:52 PM CDT

Well, drat. I wish I could edit a previous entry (like say, the one I just entered half an hour ago), because I now have a bit more information.

Ivy is scheduled for a "flex sigmoidoscopy with biopsy" on Tuesday, May 10. This is the appointment with the elusive Dr. Gleghorn I mentioned in the last entry. They originally scheduled it for the 12th, but I had to let them know how imperative it is for Ivy to be seen ASAP so we can determine her next course of treatment. I guess it worked. We shaved two days off the wait.

This procedure is MUCH less invasive than Ivy's previous scope. This will be an outpatient procedure and Dr. Gleghorn will only be looking at Ivy's colon (more specifically, the sigmoid colon, thus the name) instead of her entire GI tract. The doctor will take a few biopsy samples, even if she doesn't see any lesions. Then we wait a couple days for the pathology results, then decide the next course of treatment. So it sounds like we won't know for sure by next Wednesday, so we'll start the next course a day or so late. Okay by me.

Also, I finally added some photos to the photo album page. They're huge and I didn't take the time to resize them-- sorry. And please sign the guestbook! We love reading the entries and Ivy will too, someday.

Okay. Hopefully no new news for a few days!

love, A, P, J, and I

Wednesday, May 4, 2005 4:15 PM CDT

Well, this week's update isn't as full of good news as the others have been. Ivy's skin is acting up a tiny bit and Dr. T doesn't like that. Nor do we, of course. Also, yesterday Pete saw a bit of mucous in Ivy's stool, which we haven't seen at all since she started chemo five weeks ago. So we are all a little concerned and now trying to decide which treatment option to follow for the next six weeks. Dr. T says we have four options from which to choose and quite honestly, I can't remember the details of each. Some of them depend on other factors, like if Ivy has obvious GI symptoms in the next week.

Let's see if I can remember anything about the four options...1) another six weeks of Vinblastine and Prednisone (last week I said it would be identical to the first six weeks, but alas, I was wrong-- Prednisone is not given every single day); 2) go to maintenance, which is Vinblastine and Prednisone every three weeks and another chemo drug, 6-MP, orally every day; 3)do another induction phase, but include methotrexate along with the Vinblastine and Prednisone (for some reason, I really dread this option); and 4) other-- other being a different chemo drug altogether or perhaps Cyclosporine, which is a severe immunosuppressive drug with nasty side effects. We don't really want this option either.

A key part of making this decision is determining whether Ivy has active LCH in her gut and this brings us to another setback, which is frustrating to no end: last week Dr. T notified the gastroenterologist's (Dr. Gleghorn) office that Ivy needs another scope to confirm that her GI tract is clear of LCH (which until yesterday we were pretty sure it was). Well, Dr. Gleghorn's office has not gotten back to us yet, even though Dr. T had hoped that Ivy would be scheduled for tomorrow or Friday.

This is what happened during the diagnostic stage a couple months ago--all the x-rays, the MRI and the labwork were scheduled very easily, but it took weeks to get an appointment with Dr. Gleghorn, then another couple weeks to get scheduled for the scope. And then you may recall that that had to be rescheduled because Ivy had a cold. That part, of course, wasn't anybody's fault, but it added another delay to an already extremely delayed process.

So here we go again. The results of the scope are a crucial factor in selecting the next phase of treatment for Ivy (unless her GI symptoms are obvious). And that next phase is to start next Wednesday, though Dr. T said we can hold off a day or two if need be.

So that's where we're at this week. Wait-and-see mode. We continue the Prednisone taper for the next full week and that has been going very smoothly. Ivy had a little weight gain in the past week, but nothing as dramatic as it has been, probably due to the decreased Prednisone and thus, a decreased appetite. She's been sleeping better too and that's a huge bonus to her parents!

Ivy's on the verge of crawling, standing, and walking all at the same time and it is exciting to see what will happen first. We thought she might skip crawling altogether as so many women in our family have done, but she is keeping us guessing!

Thanks to Adria for a fun visit and a delicious Zachary's pizza last night and to Moira and Sergio for outstanding homemade chocolate cookies. Yum! We love having you guys in our lives.

Until next time,
love Allyson, Pete, Jasper and Ivy

Wednesday, April 27, 2005 10:25 PM CDT

Another chemo day to cross off the calendar...This was week 5 and so far we have been fortunate that it's all gone so smoothly. Today we started tapering off the Prednisone, which will be a two week process. That will bring us to the end of week 6 and then we'll decide whether to move to maintenance (chemo every three weeks, probably for the remainder of a year) or to do another induction phase, which would be another six weeks identical to the first six. Sound confusing? Well, it is! It's taken me quite awhile to grasp the complexities of the schedule and still the variations trip me up.

Dr. T. wasn't quite as thrilled with Ivy's progress over the last week as he has been. Her diaper area is just the tiniest bit more inflamed than it was last week. But, like I just said, "the tiniest bit," so we are not worrying yet. And the good news is that Ivy gained close to another pound over the past week, bringing her to just shy of 15 pounds.

I guess that's all we have to report on Ivy this week. She looks good (huge chipmunk cheeks!) and is cuter than ever (a waving, clapping, giggling machine). People have a hard time believing she's sick.

So, instead of this being all about Ivy, I will tell you of some of the other kids we meet at clinic each week. Each family is put into an examining room where the wait for Dr. T is reaaaaaally long (today, over an hour). This is partly because he's a good doctor and spends as much time as needed with each family and partly for who-knows-why (how can they already be two hours behind schedule at 10:30 am?). So the exam room doors are open and to keep ourselves and our wee ones entertained we start chatting. Each week it's a different family. We've met a couple kids with leukemia, 5 year old Bradley and 2 year old Joshua, and today, we made the acquaintance of Bryce, a 5 year old from Reno with a brain tumor who told me reassuringly, "But they got it all out." The marvelous surgeon at Children's did get it all out and now Bryce has several weeks of chemo and radiation before his treatment is complete.

These kids touch me and so do their parents. We exchange stories of diagnosis, treatments, prognosis. We know the names of chemo drugs and anti-nausea meds. We draw our own kids' blood! And yet, we, Pete and myself, are some of the lucky ones--Ivy's chemo is so mild, relatively speaking, and her side effects, almost nil. As for her prognosis, well, we're thinking it's better than a kid with leukemia or a brain tumor, but we don't know for sure. So anyway, if you have room on your prayer/positive thought lists, could you please add Bryce and Joshua and Bradley and Dillon, who we met in the hospital several weeks ago? He has hepatoblastoma, which you will have to look up yourself (I will venture a guess that it translates to liver cancer).

We've had some great meals over the past couple of weeks, thanks to Ilana and Greg, Leslie and Karl, and Dale and Norm, as well as a Passover feast at Dick and Anne's. A huge care package came in the mail from my online December 01 playgroup-- an awesome and very generous group of women I am so fortunate to know. We are grateful for every last prayer, kind word, and supportive email that comes our way.

Thanks for reading another update and indulging me and my bedtime musings.

love Allyson, Pete, Jasper and Ivy

Thursday, April 21, 2005 10:57 PM CDT

This will be a short and sweet update. On Thursdays many people ask me how I'm doing, how's Ivy, did her treatment go okay. Well, so far these Wednesday treatments are almost anti-climactic. The actual chemotherapy treatment lasts all of five minutes and Ivy is less and less anxious about it each week. Ivy suffers few or no side effects (at least short term), and in fact, it's the prednisone that has the more dramatic side effects. Like enormous appetite, weight gain (another half pound this week, bringing Ivy's weight to about 14 lbs-- still very petite for a 10-month-old, but great progress, nonetheless!), and unfortunately, the worst side effect of all, sleeplessness. She wakes every 1-3 hours and she wants to eat! So, Pete and I are exhausted, but it's a price we definitely willing to pay if it makes our baby well.

And Ivy's response to treatment is so promising that Dr. T. said we will start tapering off the prednisone after one more week. So it looks like we are going for the 6-week treatment, with maintenance therapy in "pulses" after that, every 3 weeks. This warrants further discussion with Dr. T., however, since we don't want this rotten disease to get the upper hand again. We don't want to undertreat it, even if it looks like it's in remission. And of course, we don't want to overtreat it, since long-term effects of chemotherapy are pretty scary. No one really knows what's best.

It might not be clear, but there are some previous entries on this page, under "Journal History." You can hear about our first emergency room visit (no worries, that too was anti-climactic). I'm also adding a link to Teresa Bogstad's page. She is the little girl who passed away on February 18 after a courageous fight with LCH. She had a very similar case to Ivy's (skin and GI involvement), and as you can imagine, it was very hard for me to read about her. But it's worth it--I've been in contact with her mom and gotten a lot of good information as well as inspiration. Even though she lost her daughter to LCH, she is raising money to fund a study through The Children's Cancer Foundation. Please take a look at Teresa's page and consider donating if you haven't already!

I will also add the link to A Night of Hope, a fundraiser that Pete and I will attend next month. We've been in contact with that family as well, and what's great is that they are local, so we will actually get to meet them. They have been great support to us so far!

Must go to bed now...
love Allyson, Pete, Jasper and Ivy

Friday, April 15, 2005 7:02 PM CDT

Just a quick update from this week, a bit of good news.

At clinic on Wednesday, Dr. T. said he "couldn't be happier with Ivy's response so far." Yay! Ivy also seems to be adapting to her constant exposure to medical personnel and gave Dr. T. some of the widest grins I've ever seen from her.

Today she is 10 months old and so, so darling. You wouldn't even know she was sick.

With this disease there are many ups and downs and we know we'll never be out of the woods entirely, but it's nice to hear good news; combined with Ivy's tremendous weight gain over the past week, we are happy!

Now we are off to have a busy weekend!

love Allyson, Pete, Jasper, and Ivy

Tuesday, April 12, 2005 7:14 PM CDT

Hmmm. I guess I can't edit already-posted entries, so I need to correct something I said in the last one: Ivy would not be admitted to the hospital just because she's neutropenic. She'd have to be neutropenic AND have a fever or some other sign of infection.

We're back from the clinic where she got her second dose of antibiotic. She's in a great mood and was the whole time we were there (close to 2 hours!).

And here's another update that should have gone out a week ago: for now, Ivy will not be getting the methotrexate as part of her regimen. Many doctors in the U.S. and even one in Austria were consulted about our little Ivy and most concur with this approach (though all admit they really don't know). We will see how she responds to the first several doses of chemo and then decide if mtx should be added into the mix. Or it may be added as part of the maintenance protocol, which would begin after the initial 12 weeks.

This is a relief for us; it means no overnight hospital stays solely for chemo administration and fewer awful-sounding side effects, like painful mouth sores.

Ivy seems to be having a good response so far; her rash is fading considerably and the blood in her stool is completely gone. Also today at clinic they said she gained half a kilo in the past week, which translates to almost a pound! We are thrilled with this news, as her size has been a major concern for several months now. I suppose we can thank the prednisone for that (it's known for being a major appetite stimulant).

I think at the end of all of these updates, we need to reserve a paragraph just to express our gratitude to everyone who has offered help and hope to us. I will try to remember everybody, but it's possible (well, likely) that I may inadvertently miss someone. Don't take it personally-- my brain is overloaded with information right now! This week we had delicious homemade enchiladas and vegetarian lasagna (thanks, Stefano and Jessica and Grammie and Emma) and a fabulous surprise, a 6 pound apple pie sent by my dear online December 2001 playgroup, the vast majority of whom I've never actually met! What a wonderful group of women! I have to also give a nod to our pediatrician who heard we visited the ER and took it upon himself to check in with us today (he doesn't read these updates, by the way, but I wanted to mention that because I think it's special). Thank you to Susan and Wayt for helping out with some research for us. And again, the phone calls, visits, cards, prayers and emails are so meaningful for us. Thank you! (I'm beginning to sound like a broken record.)

Until next time,
Allyson, Pete, Jasper and Ivy

Tuesday, April 12, 2005 3:49 PM CDT

Here is our very first Caring Bridge entry (though I will add Ivy's 3 previous updates to the journal history). I hope all of you find this to be more convenient than email.

Well, we had our first visit to the ER last night. Ivy had a low-grade fever (98.6 under the arm, which means it was a bit higher than that, plus she definitely felt hot to the touch). Because chemo patients are very susceptible to infection, a fever is not something to take lightly, or to "mask" with Tylenol. So at 9 pm (with everybody already in their jammies) I called the on-call oncologist at Children's and was actually surprised when he said to bring her in to the ER and to bring a bag, because we might actually be admitted. Wow, this really is a different world we inhabit these days.

We offered Jasper a sleepover at Grammie's (he said "YEAH!") and arrived at the ER around 10 pm. When you are potentially neutropenic (detailed definition may come later, but for now, it means a very low white blood cell count which is not unusual with chemotherapy), they don't make you sit around the ER waiting room like they do everyone else. In fact, they whisk you right away from all those infectious people into a back room immediately.

They took Ivy's temperature right away, and to our relief and mild embarrassment, it was totally normal. She was also feeling a bit cooler to me as well. But they couldn't just let us leave, so we waited and waited and waited to see a doctor who insisted that antibiotics were in order. Also, for the record, Ivy was not actually neutropenic; her count was 854, she'd have to be below 500 to be neutropenic-- this would also cause her to be admitted to the hospital.

Luckily for us, they sent us home, but not until 2:30 am! Four and a half hours in the ER and we were actually a priority case! I suppose if she'd had a high fever when we got there, things might have moved a little more quickly. I hope so.

So, in about half an hour I am taking Ivy back to the clinic at Children's for the second dose of antibiotics and tomorrow she will have her third dose of chemotherapy.

I'd like to write more, but off I must go! There may be more later today...

love Allyson, Pete, Jasper and Ivy

Update #3

Happy Daylight Savings everyone (we had no idea and wondered why Pete's dad showed up half an hour early to go to the Giants game. Really, he was half an hour late!),

Well, sweet Ivy made it through the Broviac insertion surgery and the first dose of chemotherapy. She is one brave 9 month old!

The last week and a half has been a wild ride. I believe I mentioned that Ivy's oncologist, Dr. T, said that Ivy was 'multi-system, low-risk.' Well, this opinion has been revised to 'multi-system, risk.' Because so little is known about the disease and even less about GI involvement (Ivy hit the lottery there, only 20 or so cases appear in the literature), GI involvement hadn't really been classified as either low-risk or risk. We have been in contact with a family on the East Coast whose daughter, Teresa had skin and GI involvement just like Ivy does. Teresa was originally treated with the low-risk protocol and it wasn't enough. Sad to say, she passed away in February. Her mom is an amazing and strong woman who is trying to educate parents that the low-risk protocol may not be enough treatment for kids like Teresa and Ivy, that probably a harder and longer hit of chemo is needed. So after speaking to her and then to Dr. T., who then re-consulted with his experts, we agreed to reclassify Ivy.

In the meantime, we had our consultation with Dr. Matthay at UCSF who also agreed that Ivy should be in the risk group (while also noting that no one really knows anything about GI involvement). She said she would talk to one of the directors of the international treatment protocol to find out if the addition of another chemo drug, methotrexate, has been shown to be effective (this is one of the elements of the LCH III trial. The trial has been going for 4 years now, so some preliminary data could be available). I received an email from her this morning saying that the use of methotrexate is warranted. Is this good news or bad news? We hate the idea of putting another toxic chemical into our baby, with yet more side effects, but if it works better than the Vinblastine alone, we'll do it! So what the reclassification from low-risk to risk means is that Ivy.s initial round of chemo will be 12 weeks instead of 6, will last 12 months instead of 6, and will now include the use of methotrexate. Methotrexate complicates things, obviously. It has different side effects and will be administered over a 24-hour period. This means an overnight stay in the hospital every 2 weeks. This coming Wednesday will be her first dose.

Otherwise, the visit at UCSF was depressing. Dr. Matthay doesn't seem to possess the same reassuring qualities that Dr. T. does, but still, she is very kind, knowledgeable and well-connected. Also reassuring is that Dr. Matthay didn.t disagree with anything Dr. T is recommending and also agreed the Broviac port would be the best choice for someone like Ivy.

So, on Wednesday the 30th, Ivy was admitted to Children's Hospital for the Broviac surgery. The surgery went more or less smoothly and took only one hour when they had told us it might take two. Ivy was loopy on some kind of relaxant when they took her into the OR. Funny and sad at the same time. We spent quite a long time in the recovery room, mostly because they didn't yet have an available bed on the oncology/hematology ward. The rest of the day was stressful because Ivy refused to nurse. This had never happened before! We were worried that she was in pain despite the morphine they had given her. Finally she took a bottle, but then threw it all up. This was also troubling because she needed to have her first dose of Prednisone, but could only take it when her tummy was full. She nursed finally, so we gave her the Prednisone, but then that also came up. So she missed her first day of Prednisone (already not following the protocol!), but the first administration of chemo went off without a hitch. It's weird watching a toxic substance being pushed through your baby's veins. So toxic, in fact, that we are instructed to change her diapers with gloves on for the first 48 hours.

We were determined to get out of the hospital after only one night, so Thursday was taken up with intensive Broviac training. Pete and I learned how to flush it with saline and heparin (to be done every day), how to draw blood (once a week) and how to change the dressing (at least once a week, more if needed). Then we had to have the oncology training, which includes understanding blood counts, danger signs to look out for, etc. We are learning a lot, quickly.

While we feel very, very unlucky to have had something like this happen to our daughter, we also feel fortunate when we see other kids at Children's. There are kids with very serious types of cancer who are undergoing years of chemotherapy. We met a one-year-old who has lung and liver cancer and is hoping to clear the lung cancer so he will be eligible for a liver transplant. And as far as chemotherapy goes, Ivy is getting just about the least you can get.

The doctors and nurses at Children's Hospital have been wonderful.knowledgeable, compassionate, extremely hard-working (but Ivy abhors them nonetheless!). And we have to acknowledge all of you as well; the kind words, emails, and cards mean a lot to us. Some of you have donated to the Histiocytosis Association of America in Ivy's name (her last name is Schoenberger, for those who don't know) and this is very meaningful for us. Thanks also for the homemade baklava and cookies (Jaan and Becky). We appreciate all the offers for food, babysitting, etc. We are still in the midst of figuring out what will help us most, and of course, we are very disorganized at this point. Just because we haven't gotten back to you yet doesn't mean we don't want/need what you're offering!

And just to end on a bright note, I want to share Ivy's latest cute development: she now waves (all the time). She waves at herself in the mirror, and at anyone who even looks at her (or even if they don't). Sometimes she waves at the wall. She is able to cheer us up when no one else can.

Anyway, please keep Ivy in your thoughts and prayers; she's a fighter, but she needs all the help she can get!

Love Allyson, Pete, Jasper and Ivy

Update #2

Hi everyone,

This is the second installment of our Ivy Updates and we are including a caveat for you: neither Pete nor I have any medical background whatsoever, so please bear in mind that we may sometimes have our facts wrong. We have a steep learning curve and are doing our best!

Since the last update we started Ivy on a topical steroid regimen, using Lidex on most of her rash, and then a milder cream, Desonide, on her diaper area. Our oncologist, from here on out to be known as Dr. T (for Torkildson), thought we ought to start some form of treatment while we waited for Ivy to have her endoscopy/colonoscopy. Then of course, her GI biopsy results would direct us to either continue with topical steroids or initiate chemotherapy.

So last Thursday, after a miserable night at Children's Hospital, where Ivy had a tube up her nose to administer Golightly (a poorly-named laxative), and Pete, his sister Beth, and I had no more than 4 hours sleep each, Ivy was sedated for her procedure. The procedure itself went smoothly and took no more than an hour. The gastroenterologist saw lesions in Ivy's lower intestine and biopsied them; the next day Dr. T said that he and the pathologist took a look at the slides and agree they are most likely LCH (Langerhans' cell histiocytosis, if you don.t remember) lesions. Some special stains on the slides will confirm this and we should have this news by sometime today.

While this is bad news, it.s what we were expecting. It explains the blood that has appeared in Ivy's stools since early December and also the fact that our little girl is not growing very well (malabsorption of nutrients). More specifically it's just her height and weight that we're concerned about; her cognitive and emotional development are normal.

Ivy is scheduled to begin chemotherapy treatments next Wednesday, March 30. On that day she will have a Broviac port (http://pediatric.um-surgery.org/new_070198/new/Library/Broviac%20Catheters.htmport) installed. This is a semi-permanent line into one of her veins so that the meds may be administered without having to poke her each time. Blood may also be drawn without a poke. She will be required to have surgery to have it installed. This will be the third time in her short life (9 months) that she will have had general anesthesia.

Ivy's chemotherapy will consist of a drug called Vinblastine. She will go to Children's Hospital once a week, probably Wednesdays, for her treatment. It is an outpatient procedure. She will also be taking Prednisone (a steroid) orally every day. From what Dr. T told us, it sounds like the Prednisone may have more side effects than the Vinblastine. Normally, Vinblastine does not cause nausea or hair loss, but the Prednisone can have many side effects (usually temporary) including enormous appetite, 'roid rage,' thinning of the skin, stretch marks (which are permanent). The chemotherapy will last either for 6 or 12 months, most likely depending on her response in the first 6 weeks.

Dr. T has categorized Ivy as 'multi-system, low-risk.' This means that she has multiple body systems affected by the disease (skin and GI tract), but that her vital organs are not impacted (at this point, that is). We have also learned that the relapse rate for LCH is extremely high, between 40-70%. So even if this round of chemo is effective, Dr. T said he would not be surprised if it came back, especially since she is so young. Once Ivy is beyond the 5-year mark, he will be optimistic that it won't reappear (similar to cancer, I guess).

On Monday, two days before we are to start the chemotherapy at Children's, we have an appointment in the Pediatric Oncology Department at UCSF for a second opinion. Because Dr. T is following the international protocol for treatment of LCH (http://www.stjude.org/protocols/0,2881,450_2331_9333,00.html), we are pretty confident that the docs at UC will be in agreement with his proposed treatment plan. He has also consulted with other experts in the field; this boosts our confidence tremendously. This past weekend we were at a wedding in Humboldt County and met a professor of pediatrics from UCSF who had also worked at Children's. She told us that while both institutions are outstanding, she thought we were in better hands at Children's. She said their hematology/oncology department is renowned and that we'd probably find them much more personable. As parents who are making very difficult decisions regarding the health of their baby, this was incredibly reassuring to us. We are in good hands!

As a side note, we have found a family who lives near Sacramento whose son suffers from the same illness. We have been in email correspondence with them and are looking to learn from them as they are on this path ahead of us. It helps tremendously to find others who understand exactly what we.re going through (and they are hard to find, since the disease is so rare!). They have a website (http://www.anightofhope.com) which tells their son's story as well as offers information about the disease. It also includes information about the fundraiser they are putting on for research about LCH. I hope this doesn't sound tacky, but please consider donating. It's for Ivy! We hope they are able to find a cure in her lifetime (and being optimistic, that's at least 80 years!).

And again, we need to thank everyone who has been so generous with their time and offers of support. We could not have survived the night in the hospital without Beth (well, yes we could have, but it would have been that much more miserable). Aunt Sara made us a delicious chicken dinner (that fed us for a couple of days) and of course Pete's parents are always willing and delighted to spend time with Jasper while we are busy with Ivy's doctors. appointments. And for those of you who have asked after Jasper, he is fine and seems to be oblivious to his sister's illness (and this is how we want it!). We are also incredibly grateful for the phone calls and emails of support from so many of you. Another very special offer of support came from the wedding this past weekend. Ivy and her parents and brother were invited to stand under the chuppah and receive a healing blessing from the rabbi and everyone in attendance at this special event (thank you to Randy and Caroline for this). We were so moved that so many people are thinking of and praying for Ivy.

Please keep Miss Ivy in your thoughts and prayers next Wednesday!

Until next time,
Love Allyson, Pete, Jasper and Ivy

Update #1

Hi all,

With apologies for the mass email, I want to precede this message by saying that while we have bad news regarding Ivy's health, we are feeling optimistic at the moment. Some of you receiving this email have heard nothing about what's been going on, while others have gotten daily updates. Most of you fall somewhere in between, so please bear with me if you've heard some of this before.

Our sweet Ivy has been diagnosed with Langerhans' cell histiocytosis and the reason you've never heard of it before is that it's extremely rare (affecting 1 in 200,000, mostly babies and children). It is so rare that we know more about it than some of the doctors we've seen. We saw the nurses googling it while we were at Children's Hospital Oakland.

What is it? LCH is a blood disease, whereby some of the white blood cells (Langerhans' cells) which are a part of the immune system are going crazy and producing like mad. It is NOT cancer and it is not an auto-immune disorder. No one knows what causes it. There is a form that is genetic, but this is not the kind that Ivy has. Some babies are born with it. Try these websites if you want more info: www.hrtrust.org or http://www.histio.org/society/

How did we find out that Ivy has it? In mid-September, when Ivy was 3 months old, she had a few spots on her groin area. We assumed they were flea bites. But they kept multiplying and after 3 pediatricians (in one office visit) couldn't identify the problem we were sent to a dermatologist. She misdiagnosed it as molluscum, which is a harmless virus that just needs to run its course. In the meantime Ivy developed bloody stools which we and her pediatrician thought could be a dairy allergy. So we eliminated all dairy from her diet and mine as well, since I am still breastfeeding. I lost 10+ lbs, but being dairy-free seemed to have no effect on little Ivy. She still has bloody stools daily. At our follow-up with the dermatologist we mentioned the stools and showed her Ivy's horrendous diaper rash (also of symptom of LCH)and she decided to do a biopsy of one of Ivy's spots. Almost 2 weeks later (February 8) we got the definitive diagnosis of histiocytosis.

More on the diagnosis: After finding out that Ivy had the disease we had to find out how much of her system is involved. Obviously, the more systemic the disease is, the more aggressive the treatment. We have had some good news on this front. Ivy's bloodwork came back normal. This means that her liver is not involved and that she's not anemic from the blood loss in her stools. Her skeletal survey (fancy name for x-ray) came back normal as well. This means her bones are fine, as well as her lungs. Then yesterday we received the results from her MRI: normal!! This means her brain is fine. Yesterday we had a consultation with a pediatric gastroenterologist who admitted she knows very little about LCH, but she is scheduling a series of biopsies of Ivy's digestive tract (from both ends). This will require general anesthesia (as did the MRI) and 24 hours of only clear liquids for our sweet girl. She may have to be hospitalized the night before so they can monitor her for dehydration due to her small size (her petiteness may be because of her disease but could also be due to her genes-- look at her mama!). This may happen next week.

Treatment: Even though LCH is not cancer, it is treated by oncologists and hematologists. Treatment runs the gamut from nothing (it can go away by itself sometimes), to topical or systemic steroids to Cyclosporine (an immuno-suppressor) to chemotherapy. We don't know for sure which course of treatment will be recommended for Ivy, but because the disease is so rare, there is an international protocol. This is so that different doctors aren't just off doing their own thing, but can instead all be part of a database so that we can get a better picture of what works and what doesn't. Like I said, sometimes LCH goes away on its own with no treatment whatsoever, but Ivy's oncologist doesn't seem to think this is the case for her. Once we have the results from the GI biopsy we will find out the recommended course of treatment. We will probably get a second opinion from UCSF and/or Stanford children's hospitals.

How is Ivy feeling? She's doing great!! She doesn't appear to be in pain and she looks and acts like a normal 8-month-old. She is alert and happy and has an infectious giggle. She smiles at almost everybody (except doctors!). We are so lucky to have her.

Again, sorry for the mass email. We have received a tremendous amount of support (in the form of babysitting, food, research assistance, connections to medical specialists, thoughts and prayers) from family, friends, acquaintances and even online friends from the Internet! We appreciate you all so much. Please don't hesitate to be in contact, to ask questions, whatever. We will, of course, keep you apprised of new developments (but it may be in the form of another mass email!).

Take care, Allyson (and Pete, Jasper and Ivy)

Tuesday, April 12, 2005 3:29 PM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----