Today was a rough day. It seems that the infection has spread to the roof of Peyton's mouth (the palate). Tomorrow, she will have a CT scan to see how far it has spread (whether it is now in the brain or the eye). On Thursday, they will take her into the O.R. and debride the infected tissue. Peyton is getting a white blood cell transfusion tonight, to see if that will help her fight this. We will know by the weekend what the next course of action is. Please continue to pray for Peyton, and for Krissy and Dru, as they are beyond devastated.

Peyton went back into the O.R. today. The surgeon debrided (scraped away) the fungal infection in Peyton's nose and removed some structures within her sinuses that were infected. The surgeon now believes that the infection is neither Mucor nor Candida, but rather Aspergillosis (caused by the mold Aspergillus). This is another type of fungal infection that, while aggressive like Mucor, is much slower-spreading, which is a good thing. The surgeon thinks he was able to remove all of the infected tissue today, but Peyton will be going back into surgery on Thursday to debride the area again, and to make sure that there is no newly infected tissue. Until then, we are waiting for the culture to officially come back, to officially identify the type of infection. We were all hoping it would come back by today, or tomorrow at the latest, but the doctors are now saying that the culture may never come back (as the mold doesn't always grow enough in a petri dish to get a culture). So, I might not have anything new to report between now and Thursday (the next surgery). All Peyton's chemo is on hold, and will continue to be on hold until the infection is resolved. So we just have to pray that the infection resolves quickly, so that Peyton can resume her cancer treatment as soon as possible.

Ok, so today (or tomorrow at the very latest) is when we will find out exactly which infection Peyton has and how far it has spread. There are two possible infections. The infection which the surgeon who operated the other day thinks it is (Mucormycosis), is not good at all (as I had written the other day). The other possibility is Candida, which may look the same in terms of how it affects the body, but it is a lot more responsive to treatment with medications (curable), and therefore would give Peyton much better odds. Please pray that this is what it is. We love you, Peyton. You are so strong. We pray with all our heart that you will get the miracle that you deserve.

Hello. Not much new to report here. Someone from the lab came to see Krissy and Dru today and told them not to give up hope yet. They have started Peyton on a very strong medication to try to treat this infection. In addition, they have been giving Peyton morphine every 1 to 3 hours as needed to keep her comfortable. My sister and Dru were trying to be hopeful today that the medication for the infection will be the miracle drug she needs. This emotional roller coaster is so hard. One minute you're down, the next you're up, and then down again. They won't really know much more until Monday. At that point, all the cultures will have come back so that they will know for sure exactly which infection Peyton has and how far it has spread.

As I write this, my heart is breaking for Krissy, Dru and little Peyton. Peyton went to the O.R. today, and the doctors found that she has a highly-aggressive fungal infection, which basically destroys tissues from the inside. It is in her nostrils, and the doctors fear, also in her eye, brain and possibly lungs. We will know how far the infection has spread on Monday. This infection is fast-acting and highly invasive. Oh my God. I can't make any sense of this. None of us can. It is so unfair. Why does this have to happen to this beautiful, innocent baby? Please pray for Krissy, Dru and Peyton. We are all so incredibly sad for Peyton but so worried for my sister and Dru. No one should have to feel such a crushing grief like this. I am so sorry, but I can't even type anymore.

I just received word that Peyton has taken a turn for the worse. She has developed a serious infection and is being rushed to the OR. Oh my God. Please, everyone...pray for this little girl. She needs a miracle. We (especially Krissy and Dru) are all terrified.

Ok...Update from my sister....They have not taken Peyton into the O.R. yet (3 hours later). It is now almost 3:30 in the afternoon. They are waiting for cultures to come back to determine the type of infection. Peyton has no fever, which is good news...but still will be going into surgery. I guess they just need to know what infection they are dealing with first.

Peyton came out of surgery, and as of 7:30 pm last night, was sleeping and recovering. She got a new line in her leg, which was placed right where her diaper meets her inner thigh. Unfortunately, this makes it a scary area in terms of being prone to infection. However, if her staph clears she can get a new broviac in a few days and take this diaper-area line out. Peyton's voice is hoarse again, from the intubation and they have moved her feeding tube to the other nostril because she developed a "clogged tear duct-type infection" on her right side, which they believe may have been caused by the tube's original placement. Krissy was a litle sad to think that Peyton just had this surgery and in a few days will go back to the OR. But Peyton is one tough cookie and has been putting up an amazing fight to beat this cancer. Krissy and Dru are both so relieved to have made it to day 15 of treatment, and are happy that Peyton has had two whole weeks without cancer cells in the cerebrospinal fluid, despite not having all of her meds. Anyway, last night Krissy and Dru were pretty exhausted. They were still recovering from Wednesday night, when they didn't get home and to bed until after 2am... and were extra exhausted from the stress of her going into surgery again. So hopefully they got a better night's sleep last night.

Oh, and I forgot to add that yesterday, Krissy and Dru found out exactly how rare Peyton's cancer is. While infant ALL is one in 5 million, there is only one other baby in the United States who was diagnosed with this cancer at birth and is going through the same treatment protocol as Peyton. This other baby is on the West coast somewhere and is about 3 weeks older than Peyton. Peyton's team of doctors has been in touch with the other baby's doctors, and they have been using each other as a valuable resource, to bounce ideas off of, try new things, etc. I wish there were some way that Krissy and Dru could be in contact with the other family, and Krissy and Dru wish this too....but, unfortunately I don't think that privacy laws allow this. Maybe that other family will stumble upon this blog....?

Hi everyone. I was just on the phone with Krissy. Peyton is in the OR. The doctors decided that they cannot salvage the Broviac line, so it has to come out. Will update later.

Today's update....Peyton had a better day today. She had one white bloodcell in her spinal fluid, but the cytology report showed that it was not a leukemia cell...so it seems like her central nervous system continues to be clear of the cancer, even though it is still in the blood. And the best news of the day....Peyton's bilirubin count is finally starting to trend downward (now at 5.4, when it had been at 7+ and even 12+ at some point). The levels still aren't low enough for Peyton to get the vincristine yet this time around. Hopefully her bilirubin levels will continue to fall so that she can start back with the vincristine drug by next week (this is her best shot at the first stage of remission, if she can resume the medication). In order to receive the vincristine, her bilirubin level has to be under 1. This will show them that her liver is functioning well enough to tolerate the drugs. They are also hoping to wean Peyton off the oxygen soon. At only 6 1/2 lbs, Peyton continues to be small but mighty. Keep on fighting, Peyton! :)

My parents wanted me to post this. It is the link for an e-greeting card that my parents' friends sent to them, and it is really sweet. Just copy and paste onto your browser.

http://www.123greetings.com/view/ND10921144504923

Here is the latest medical update.... The doctors decided to keep Peyton's Broviac (main line in her chest) in for now, because the site looked a little better. Peyton has the staph, but they are hoping to treat it with antibiotics. They will give a the Broviac line a few more days before deciding whether or not to pull the line (in the hopes that it gets better). Peyton had a nice visit from her Grandpa yesterday, which allowed Krissy and Dru some time to rest a bit... Krissy and Dru really needed and appreciated this! Peyton had good and bad news. Her Bilirubin is still high but has come down to about 7.4 (she was at 12.4 at one point). The bad news was that (due to continued liver issues), there doesnt seem to be any likelihood that Peyton will receive her vincristine (chemo) tomorrow. The doctors all have expressed that this is very worrisome in terms of her ability to beat this cancer, since they are straying from the protocol quite a bit, with her now missing her second week in a row of vincristine (one of the more effective drugs). Needless to say, Krissy and Dru are terrified. Peyton had the ultrasounds of her brain and stomach today. The brain bleeds are resolving and the liver still didnt show any additional mass, which was good news. Today she will have a spinal tap. The doctor they spoke with yesterday said she is showing some blasts (cancer cells) in her blood again, so they are not doing a bone marrow because there is no point in checking that till her blood is really clear... My sister and Dru pray that they can get her into remission even with having missed so many meds.

Krissy and Dru have asked that I express their gratitude "to everyone who has visited the site, offered prayers and left messages of encouragment for us. We feel extremely fortunate to have the love and thoughts of so many directed at our little girl's wellbeing. We wish we could reach out to everyone and thank them, and we will do this in time, but unfortunately its been hard to let people know how much their support means to us."

Here is the latest update, taken from an email that Dru sent last night:

The update on Peyton today really isn't too good. Not horrible, but as always surprises in the midst.

The good news is that she only got nauseous a little bit today. When she threw up, it was all mucous (nothing from the belly). Her hematocrit level is a bit higher also, which we contribute to all of the lovely skin to skin time Krissy and she have been having.

On the not so good side is that her liver is still not looking any better. Her bilirubin is still about twice where it should be. She will have another abdominal scan tomorrow to see if they can pinpoint any problems. She needs to get this under check and fast so that they can continue the treatment. This is the most worrisome right now as we don't want her to have liver failure. We want her get back to the treatment she needs.

She is also going to have another spinal tap Mon or Tue as well as a possible bone marrow testing. Also by Tue is when her treatment would start back up with the Vincristine (chemo) if her liver allows.

If that isn't a full enough schedule, she will be having a follow up scan on her head to make sure there aren't any other bleeds.

Oh wait there is more....because her third blood culture came back positive for the staph presence probably in the actual broviac (sp?) line, that was surgically placed only a few days ago, they are going to want to remove it tomorrow and put in a different line in her arm or leg. This one would be a step down from the current one because it won't have two access points like the current one to run two IVs at once and will be less stable (doesn't last as long as the current and will need to be replaced sooner). This means another intubation which she was just finally recovering from (hoarseness and reluctance to take things by mouth).

Peyton is being stubborn with the breastfeeding and frustrating Krissy also as she is having to take most of her milk by feeding tube. We think it might be that she is just not able to get into a rhythm between the sores in her mouth/throat, going from nipple to bottle, as well as the nasty medicine for her liver, the nausea, and putting on restrictions every now and again from feeding :( poor girl.

Unfortunately, no real good news today. Peyton is now getting the bulk of her nutrition through the feeding tube. Unfortunately, she spent a good part of yesterday throwing up. As I had written in an earlier post, Peyton's spleen (which had been enlarged) is nice and small now, but her liver remains enlarged. Her bilirubin levels are still really high because her liver isn't functioning as well as it should be. Until her liver is up to par, the doctors have no choice but to hold off on chemo. This has Krissy and Dru worried. Please pray that her liver function improves so that she can start with treatments again.

Peyton is also still on the oxygen (due to the fluid that has been in her lungs) and continues to battle with that staph infection (which is in her surgical wound sites). Overall, it has been a rough few days so we really hope that things can turn around and fast.

Krissy and Dru are at the hospital today. Not sure, but I think my dad might be there too. He and my mom have been spending a lot of time between the hospital and Krissy and Dru's house. Today, Mom had to stay back because she woke up with a cold. Mike and I also were unable to go because Emily and Abby both are sick with colds, and Emily's been having some side effects from seven immunizations that she had on Thursday as part of her 5 year physical (on and off low grade fevers, etc). None of us can chance bringing any germs to Peyton...but it's so hard when you want to be there for her and for Krissy and Dru.

I just got an update from Krissy, sent to me via email last night (or, I should say this morning), as she only hit the sack after 1 am. Anyway, here is the medical update.....Peyton had to have a feeding tube inserted up her nose and into her stomach because she has not been taking enough by mouth. My sister has been breastfeeding her, but because of all the poking, prodding and medications that she has been having to take orally (against her will most of the time) she has developed an oral aversion where she is afraid of anything coming near her mouth. So the tube will guarantee that she will get enough to eat. The doctors have taken Peyton off the tpn (her nutrients she was receiving via IV), because there was a fear that this tpn has been contributing to her high bilirubin levels. Peyton was also diagnosed hypothyroid yesterday. This has nothing at all to do with her leukemia, but has been wreaking havoc on her liver unfortunately (I guess because it messes with your overall metabolism). As a result, the doctors have to hold off on Peyton's chemo until they can get her liver function up to par. So we are really hoping that she turns around and gets better with her liver function. PLEASE PRAY, EVERYONE!!!!Peyton's spleen is currently 5 times the size it should be, but when she was born it was 10 times too big, so she is making progress. On a good note, Peyton tested negative for the RSV which is a respiratory virus they were concerned she might have (because they saw fluid in her lungs on x-ray). However, Peyton does have the staph infection (at her wound sites, from where her Broviac- main line- was inserted last week). Overall, Peyton had an alright day yesterday, though she was throwing up at night, which made my sister, Dru and everyone else sad and frustrated because she threw up her Actogal (the medication for her liver), right after having received it via the feeding tube... But she didn't through up for long, and settled down pretty quickly.

My sister told me that she has been incredibly touched by everyone's thoughtfulness, prayers and generosity during this tough time. Unfortunately, it is still really difficult for Krissy and Dru to talk to people about Peyton without breaking down (which is more than understandable), but just knowing that everyone is there for them when they are ready is what will help get them through this. So, for all you caring family and friends, here is a sincere "Thank you."

I received a medical update today from my mom. Peyton has a staph infection, which was a bit of a scare, but the doctors now have it under control. This is one tough little girl...Keep fighting, Peyton.

First of all, thank you Mom and Dad, who have been staying with my sister until all hours at the hospital while Dru is recovering (and helping them with the mundane chores around the house, so they can focus on Peyton)...and thank you for keeping me in the loop during the weekdays when I am holding down the fort here on Long Island.

Well, today was a real emotional roller coaster. Kristin woke up with a scratchy throat and opted to stay home with Dru (who is also still sick). At 10 am she was in touch with the hospital, and was told some pretty scary news. Peyton, who had sounded congested since last night, went for a chest x-ray. They found fluid in her lungs, and Peyton was having a lot of difficulty with breathing. She was placed on oxygen and given some more medication. This news of fluid in the lungs was very concerning as Peyton doesn't have the ability to fight off any kind of infection right now (since the chemo destroys her white cells in an effort to get rid of the leukemia), so pneumonia at this point can be life-threatening. Anyway, the doctors also did an ultrasound of the liver. Peyton has had a yellow skin tone, due to elevated bilirubin levels, so they were concerned that she may have a mass in the liver. Anyway, at 3 pm I received the update. Peyton responded well to the medication to clear out her lungs and is, once again, breathing on her own without oxygen. And the liver ultrasound showed that there is no mass. As the chemo kills the leukemia cells, the liver holds these cells in an effort to try to get rid of them from the body. This is what has been resulting in her elevated bilirubin and skin tone. So, it was a scary day, but little Peyton continues to fight.

Anyway, here are some pictures of Peyton from this week.

Here is a post/update, written by Dru's friend Holly (who spoke with Dru, aka "Andy" yesterday at lunchtime)...

Hey,

I spoke with Andy during lunch today. He has a cold, so he stayed home from the hospital as to not contaminate Peyton's weakened immune system. He doesn't sound too well, but he assures me that he doesn't feel as bad as he sounds. I have to wonder if a part of his illness is due to stress. It's good that Krissy can still continue to go to the hospital and to be by Peyton's side.

CURRENT:
Andy says that Peyton's blast cell (leukemia) count when last tested was at 50. Her blast cell count was around 70,000 when she was born. The doctors will consider her in remission when her blast cell count is at 0. She just had 2 "off-of-chemo" days and may restart treatment today. The doctors are constantly monitoring her blood and organs to determine if her system can handle another course of treatment. Some days she may have a full-dose of chemo and others she may have half or quarter-treatments. Andy says that Peyton has a few nasty bruises:
- 1 on her arm/hand from a missed IV attempt
- 1 on her leg from the Vitamin K shot she received when she was born, and
- 1 on her eye-lid.

TYPICAL DAYS
On most days, Andy and Krissy arrive at the hospital between 10a-11a and don't leave until 10p-midnight. While they are allowed to stay at the hospital overnight, they have opted to make the 40-minute drive to their home in Burlington to shower and rejuvenate for the next day. He says that most days are filled with holding Peyton, feeding her, and changing diapers. Peyton has a port-like device (Andy has a fancy medical brand name for it) that was inserted into her chest that the doctors use for medicine and fluids, because IVs are not meant for permanent use.

FUTURE
Andy remains very optimistic and says Peyton will be in the hospital for her first 3-6 months, and if all goes well, maybe she will be allowed to go home for 1 or 2 days at at time.
Andy and Krissy received a print-out of doctor's "plan" for Peyton's treatment yesterday, which they previously didn't have.

Added by Kate.....In addition, Peyton will need a possible stem cell transplant after she is in the first stage of remission (M1) to prevent a relapse (which usually occurs during the first 6-12 months), so this would likely be done soon after she enters M1 remission.

For ways in which we can all help Dru, Krissy and Peyton, please click on the following link:

http://welovepeyton.blogspot.com/2008/09/peyton-was-born-on-thursday-september-4.html

Peyton had a good day today. We were really concerned about her, because she had been bleeding a lot (in her urine, and when she vomited) over the past week, due to fluctuating platelet counts and also as a side effect of one of her chemo drugs. So, after what was not the greatest of weekends, my sister and Dru finally got a bit of good news today. Peyton had a second spinal tap (the first one, done last week confirmed that the cancer was in Peyton's cerebrospinal fluid/ central nervous system- brain, etc). Today, Peyton had a follow up spinal tap which showed that the chemo has gotten rid of the cancer cells in her cerebrospinal fluid. Yay! This is definitely a step in the right direction. Also, the second bit of good news was that Peyton had a CT scan today, which showed no more bleeding on the brain. Peyton was born with two small bleeds and, despite the fact that Peyton's platelet count has been low much of the time since then, the bleeding has disappeared! Yay, Peyton!!! So please please please let's continue to pray that her cancer goes into the first stage of remission (M1) quickly.

Mike and I and my mom and dad were able to visit with Krissy, Dru and Peyton this weekend (on both Saturday and Today). On Saturday (yesterday) Peyton had her chemo at 4 am and a platelet transfusion at around 1 pm. She was having a bit of a rough day yesterday, as the chemo makes her belly sick. Peyton was nice and alert though, and we (the aunt and uncle) were able to hold her for a nice long time. This was great, as it was the first time that we were able to hold her. At around 4:30, she finally dozed off for a nap and we were able to convince Krissy and Dru to step out for a while to eat a meal. Krissy and Dru are having a rough time allowing themselves time to eat, so we have all been trying to encourage them with this, as they need to stay healthy for Peyton. They love their daughter so much, and it is clear just by looking at them what devoted and loving parents they are.

Today we went back again. When we arrived, we found out that Dru is at home sick today....Feel better soon, Dru. So Krissy was at the hospital solo today, as they can't risk bringing any germs into Peyton's room. Peyton was having a rough time earlier in the day, but the nurses increased her pain medication and she seemed much happier by the time we arrived. My mom, dad, Mike and I got to hold her for a nice, long time again today. And on a separate note.....thank you, Chris and Roseanne for cheering Krissy up a bit today. It really means a lot!

Peyton is a beautiful baby girl, born on Thursday, September 4, 2008 at 2:14 pm to her loving parents, Kristin and Dru. Within moments of her birth, it was discovered that she had developed bleeding problems and difficulties with clotting. She was immediately stabilized with a platelet transfusion and transferred to a level 3 NICU. Within a day it was discovered that little Peyton was born with a rare and serious form of Infant acute lymphoblastic leukemia, sometimes called congenital ALL (or CALL). She is fighting against the odds, receiving intensive chemotherapy, and we pray each day for a medical miracle for this precious baby.

Many people have asked me, Peyton's aunt, how they can help. Well, here are several things that we all can do that will go a LONG way:

1. Pray! And please ask all your friends and family to do the same. If you can, add Peyton to your prayer roll at church. Peyton needs a medical miracle, and we definitely cannot underestimate the power of prayer.

2. Donate blood. Peyton is type A +. She has already received many transfusions and will continue to require these to stabilize her platelet count and prevent bleeding issues. Her hospital does have a direct donor program, so if you are interested in donating to her, you can contact the hospital. The web address is www.ccmckids.org. Even if you are not of the same blood type, please please please consider donating blood! One half a pint of blood can provide a baby like Peyton with 10+ transfusions, which is simply amazing!

3. If you have a moment, please send a letter to Peyton's parents to let them know that we are all here for them when they need to talk.

4. I will be adding a "chip in", onto this blog, which is a link where donations can be made through Paypal (whether 50 cents or 50 dollars, every little bit will help). This is going to be a long road filled with long-term hospital stays, chemo, home nursing, multiple medical procedures, and possible travel long-distance to specialty hospitals for specific procedures. Peyton's parents have insurance, but even the littlest of copays add up over time. Peyton's parents are wonderful people who would NEVER ask for help or a dime from anyone and that is EXACTLY why I want to set something up to help them. Another idea is to find out which chain restaurants are in the area and send a gift certificate. Kristin and Dru will both be staying in the hospital with Peyton (45 minutes from home), and Peyton is expected to be spending at least 6 months in the hospital, so they will not always have time to drive back to the house to grab a bite to eat.

5. Please, if you have time to read and research, any and all information is welcomed. Please send to me at kdlugozi@hotmail.com. Any information on experimental drugs, research projects or clinical studies that Peyton may qualify for may just lead to the medical miracle we are looking for.

Thank you so much. It means so much to Kristin, Dru and little Peyton to know that they have the prayers, love and support from so many family members and friends!

***Medical update...Peyton's was moved today from the NICU to the children's oncology floor, because she is considered medically stable enough to transfer there, so that is great! :) Her spleen is shrinking, which is a good thing, as it was pretty enlarged in the beginning. Her liver is still enlarged, as the liver gets filled up with all of these cancer cells....but it hasn't gotten any bigger over the past week, which is a good thing. Hopefully the liver will start to shrink soon. Peyton's platelets are an ongoing issue. After transfusions, the numbers go up (and her color looks good), but then eventually drop (and her color changes and she starts to bleed and bruise), so she will need ongoing transfusions. Her white blood count has been dropping, which is a very good thing. In fact, it is dropping much faster than the doctors even expected and faster than they usually see in these cases, which is amazing...maybe all of our prayers are working?!? I hope so. The doctors did a spinal tap last Sunday and found the cancer in her cerebrospinal fluid, but they expected it to be there and are pretty sure that they can get Peyton into the first level of remission. They will do a follow-up spinal tap in a few days. Peyton has a couple of small brain bleeds (because of the clotting issues), which they think she's had since birth, but they are small and the doctors think that the prednisone will cause them to shrink. The doctors are not at all worried about them.

The good news is that 80% of kids with infant ALL make it into remission (usually after about 4 weeks of treatment), but the issue is that cancer comes back in a lot of the cases. At that point, it is much harder to treat/resistive...and can come back anytime until her third birthday. Once she becomes 3 years old, Peyton will be officially considered cured, and we will be throwing a BIG party, complete with a pony named Peyton bought by her daddy. So Peyton will need all of our prayers for this crucial month to get into remission, and then double the prayers to stay in remission. Hopefully, by that point, one of these studies will come through for her....i.e. St Jude's or the National Institute of Health or Sloan-Kettering, or a similar research institute will accept her to try out a top of the line treatment to prevent a relapse. That is what I pray for more than anything.

Thank you so much for your continued thoughts and prayers.