hey everybody - i'm happy to say that we are going home today. i'm a little frustrated to say, we still do not have results from the final biopsy test that was run. we have been told that they are attributing ashley's illness to repercussions from her BK virus, which is a viral load that has been positive in her blood stream for a little over a month. they are blaming the BK virus for her ulcers, and having us follow up with the gastroenterologist who performed her scopes and biopsy in about a month. she is still having symptoms, including diarrhea and weight loss, but they say we can go. she is going to have labs drawn again on monday. one of her viral panels became "undetectable" as of yesterday, which is almost unbelievable! apparently, her immunosuppression was just too great, which we have known for some time. her white count dropped dangerously low more than once. the problem is finding the balance between keeping her immunosuppressed enough that she doesn't reject her ogran, but not suppressing her so much that she cannot fight viruses at all. which is what they believe happened in this instance.

her pneumonia has resolved. she only has an occasional residual cough left. her appetite has not gotten back to normal yet, but for the time being, we are changing formulas to try to bump her nutrition up. she is going home on only 2 antirejection meds. they discontinued three. so they will follow her labs closely to look for evidence of transplant rejection. please pray that her body will find an equilibrium, as this will be a battle she will fight the rest of her life.

thank you to every single person who prayed for ashley, and for us. we are relieved that she has not been diagnosed with PTLD, although we remain cautious. her ebv gram stain did show some evidence of ebv in various places in her colon, though not enough to consider it PTLD. we will continue to watch that lab closely, as we get a numeric value for the amount of this virus present in her bloodstream. thank you again, from the bottom of my heart, for the emails of support and prayers going up in ashley's honor. i can't thank you enough. the next update will be from home! love -camille-

i apologize for not sending an update sooner, but there really hasn't been one. ashley received a blood transfusion, which really made her feel better. we STILL do not have a final result from the pathology report of the biopsy taken on THURSDAY. the gram stain for CMV came back negative, and the EBV was "not negative, but not positive" (whatever that means). i was told if the EBV gram stain came back positive, they were going to consult the bone marrow transplant team about treatment options. however, since it supposedly was neither here nor there, they are going to get a CT scan of ashley's abdomen for look for any significant lymphadenopathy, and they are running yet ANOTHER EBV test on the biopsied tissue. it may be two days before we know the result of that.

needless to say, julie and i are emotionally and physically exhausted. at this point, we are so exasperated, we don't care what the answer is, we just want one so we can move forward with some sort of treatment plan. it has been difficult for us to juggle working and being with her. i took off today to stay with her in expectation of having a pathology report. now julie will take off tomorrow, because she will have to be sedated for the CT scan. i promise to let you known when and if we know anything. in the meantime, please continue to keep us in your prayers. this has been a difficult time for all of us. having it happen during the holidays doesn't make it any easier. thanks. love -camille-

today we really don't have any news. the pathology is not back from her biopsy. we did find out that ashley has greater than 30 (yes, thirty) ulcers in her lower intestines. she received a blood transfusion, which has really helped her feel better. although people kept remarking how pale she was, i couldn't tell a big difference until she got color back in her face after the transfusion. she ate quite a bit today, too, which is something to be joyful about. i don't know whether we will have a pathology report sometime during the weekend or if we will have to wait until monday. i will update as soon as we have news one way or the other.

hey everybody - ashley is out of surgery. the gastroenterologist said her upper GI tract looks pretty good. the lower is covered with ulcers. some deep, some superficial. he said there were, of course, lots of good places to take biopsies from, since she had so many places of abnormal tissue (each ulcer). they have sent multiple biopsies to pathology and hope to have a result by tomorrow, but it could be as late as monday. the doctor said he would really try to push pathology to get it done asap.

she is on some oxygen, and is comfortable. today her hemoglobin dropped from 10 to 7. that's a big drop for such a short amount of time. she's going to receive a blood transfusion. no one seems to have an answer about where that blood went - normally, i would suspect a GI bleed, but so far the labs point to no such happenings. so we will continue to wait. i have not seen her nephrologist today. he said he was going to come back around after her surgery. please pray for our little one. i know you all have been. i am trusting that she is in god's hands.

hey everyone - today has been the best day for ashley in 2 weeks. she has been very alert and watched barney (her FAVORITE) for the first time in 2 weeks! she also ate some solid food for lunch!

her doctors are happy that there was no lymphadenopathy on her chest CT, but are moving on to the next system to try to track down the source of her problems. she is going to the OR tomorrow to have a colonoscopy and endoscopy and a biopsy of tissue. The GI doctor told me he hopes to have an answer by friday (on whether or not they find PTLD in her GI tract). they are just following the symptoms now. she has had diarrhea for a week and it hasn't changed despite changes made in her diet and meds.

so far today, ashley has had NO FEVER, which is the longest time fever free since the day before thanksgiving. her LDH also went down some today, but is still in the high 2,000s (920 is the high end of normal). i don't know what to make of our baby, but i am glad she is feeling a little better. we are anxious for an answer to her problems, though. despite all this, her kidney numbers have remained PERFECT. so far, there is no evidence of organ rejection, despite taking away almost all of her antirejection meds. keep praying! it's working...pray for an answer and a treatment path.

hey everybody - ashley had her chest CT scan done today. the results are back, and they saw no lymphadenopathy - in layman's terms, they saw no swollen lymph nodes in her chest or upper abdomen. i saw dr. hymes this morning and he told me he was waiting for the results of the CT scan to figure out the next course of action. he also said, even if the chest CT shows no lympadenopathy, that doesn't mean she doesn't have PTLD. he said if it came back negative (showing no swollen lymph nodes), he honestly wouldn't know what to do next.

SO. i haven't seen a doctor. i've only read the dictated report from her scan. i don't know what their next move will be, and i don't think they do either. she is still running fevers consistently without an identified origin. my educated guess is that they will want to biopsy something. i just have no idea what. PTLD can present anywhere in the body. i've known patients to get it in the tissue behind their eyes, their tonsils, their brain, their colons....so i guess now we turn into a real life episode of "house." i will let you know when/if we know anything. thanks for the prayers. please keep them coming.

hey everyone - i have been updating our core group of friends and family via email, and i knew i was leaving out many people who check in on us regularly, but there has been no extra time for me to post here. in fact, i don't really have time to be posting now. i'm going to copy/paste the emails i've sent out over the past week, in chronological order. this will update you on where we are with our little bundle of misery. please pray.

NOVEMBER 24:
hello everyone - ashley has been sick. friday she wasn't acting like herself. she was fussy fussy, and then irritable, with spurts of her "normal" self in between. but something was off just enough to make us a bit worried. she was fussy and clingy throughout saturday. then saturday night she became downright inconsolable. she cried all night long, and although she only wanted to be in my arms, even then she continued to cry. and not a "whiney" cry. an "i'm hurting/something is wrong" cry.

yesterday morning i went into work for a bit and julie called to tell me ashley was "drooling." because she has never drooled since coming home with us in february, i asked if she was sure. she said yes, she was drooling copious amounts of saliva. that worried me, because we recently had a transplant patient who contracted PTLD (the type of ebv-related lymphome her doctor is worried about her getting), and it localized in his tonsils. he came in with respiratory distress and drooling, and when he went to surgery, his tonsils and adenoids were necrotic and malignant. however, ashley had no respiratory distress. some coughing, and gagging, and extreme fussiness, and a low grade fever, but no respiratory distress.

last night she, again, screamed all night. was inconsolable again. she cried into the morning, and again, wanted to be held but still cried pitifully. she was due to have labs drawn at the hospital today, and i was working my patients' clinic with one of ashley's primary nephrologists. i asked him to please take a look at her before we were going out of state for the holidays.

at first he worried that it was either early mono or strep throat. her strep culture was negative. there's no way to definitively know if it's mono because EBV (the virus that causes mono) is something ashley already has in her blood. at the last minute, dr. hymes called the lab and asked if they had enough leftover blood to run her LDH. if elevated, this can be an early sign of lymphoma. some of you are aware, one of the meds ashley was on can cause lymphoma in EBV-positive patients (as she is). a normal LDH is no higher than 920. ashley's was 1,426 today. they are not panicking yet (or aren't letting us see it), but are planning to check both her LDH and EBV again on monday. if they go up again, it's a bad sign.

the doctor that saw ashley today said, 2 weeks ago, that he was very worried about ashley and PTLD (the prograf-induced lymphoma). it will take further lab work and diagnstic imaging to definitively say she has cancer, and we are not to that stage yet. but PLEASE, pray for our baby. and our family. pray that god will heal her body and make her feel better and keep her safe. there is nothing else we can do between now and then. and if anybody deserves some time just to be a normal, healthy child, it's ashley. she has so much life left to live. thank you for keeping us in your prayers. love -camille-

NOVEMBER 29:
hey everyone - we are in michigan, so it has been nearly impossible to update. our cell phones barely have service up here. on thanksgiving morning we took ashley to the e.r. she has pneumonia and her ldh has increased to 1910, from 1426 on monday. there really wasn't anything that could be done for her here, so they released us with some antibiotics and told us to follow up at egleston as scheduled on monday.

since thursday, she has really begun coughing badly, she is also not keeping down anything she takes in by mouth. and she has only kept down about half of what we give her by g-tube. it has been 8 days since she has slept more than 3-4 hours at a time (and so of course, that goes for both julie and me, too). she developed diarrhea yesterday, but we are not sure if it's due to the antibiotics started thursday or a new more calorically dense formula. either way, she is still sick. she has kept a fever all week, not ever going away completely, even with tylenol. she continues to be very fussy, very clingy, and just in general feels awful. there are brief moments where she perks up and seems to be herself, but just as quickly as she turns around, she crashes again and seems to take the rest of the day to refuel again.

we fly home tomorrow, and she will be seen at egleston on monday. we are expecting maybe a CT scan tomorrow. they were planning on redrawing her ldh to see if it had gone up (which we were told would be "bad"), but since we already know it's gone up, they may not even check again. we will let you all know when we have more information. we think we know what her diagnosis will be, but until i hear it definitively, i will wait to say it. thank you for keeping us in your prayers.

DECEMBER 1:
hey everyone - i am updating from our room at egleston. we left michigan yesterday morning and called her transplant coordinator, insisting that ashley be seen as soon as we arrived back in atlanta. they admitted her directly and held a bed for her until we finally got here after being delayed twice in detroit. we got to egleston around 9 p.m. last night. they did a stat chest x-ray and found that she has retrocardiac pneumonia, which pretty much just means that the infiltrates in her lungs are partially obstructed from view because they are behind her heart, so it is easy to miss. they started her on iv fluids and iv antibiotics. she remained febrile and extremely fussy throughout the night. they did not feed her, so she has not vomited.

this morning they drew labs, and i am still waiting on the results. her primary nephrologist came in and said he thinks it is one of two things: either her rapamune (new main immunosuppressant) has caused the pneumonia, or it's PTLD (post transplant lymphoproliferative disease). he said in either case, she looks better than a kid with either of these diagnoses typically does. in my opinion, ashley is compensating. she certainly is NOT herself, but she is compensating when and where she can, but every child eventually tires out when this is the case and she can't continue this way indefinitely. they are going to get a CT scan of her chest to look for PTLD (lymphoma). he would like to take a tissue biopsy from somewhere that the PTLD may be "hiding", but her lymph nodes are not grossly swollen. he said he may consult the ENT doctors to see if they will biopsy one of her tonsils. also, he is going to stop the rapamune and see if this makes any difference. that, of course, puts her at risk for rejecting her organ, because she will be down to only one antirejection med. so i guess the overall news is that there is no news.

ashley is still sick, they still aren't sure why, but i feel safer with her being back home, back with her primary team of doctors, where she can be monitored constantly. i doubt she will have her CT scan today, because she will have to be sedated and they typically don't sedate kids after 1 p.m. because it requires an anesthesia team. so it may be tomorrow night or later before we know anything from the scan. please keep our baby in your prayers. she is just pitiful. i would give anything in the world for her to feel better. we are on 6 east, in room 6246. please call us if you are planning on visiting, so we can assess the best time. thanks everyone, for everything. love -camille-

AND TODAY: i have not sent an email out today, but ashley has had her CT scan, so we are waiting for results. i will let you know when and if we know anything.

hey everyone - sorry for the delay in updating. ashley has been feeling well, but we have encountered some new problems. immediately after transplant, all of ashley's viral panels were negative (she had no viruses that transplanted patients commonly acquire). she converted to positive after starting back to daycare. she is positive for 3 viruses, which all pose different problems. one is EBV, which can cause lymphoma (cancer when you are taking prograf at the same time you have this virus. her doctors moved her kidney biopsy up in order to confirm that she had no rejection, so they could then stop the prograf and start a new med. however, her level of immunosuppression had gotten pretty low, so they wanted to decrease the amounts of antirejection meds she was getting in hopes of making her WBC (white blood cell) count go up. her WBC count was 5 when they decreased her meds. last week when it was checked again, it was 3.38. so her little immune system is basically non existent. but then her viral levels almost doubled in a week. so they went ahead and switched her to the new med anyway. one of her drs is particularly worried about her contracting lymphoma and is keeping a close eye on her.

she is also positive for bk virus, which can cost her the new kidney. she is currently on leflunomide, a med that should take care of that. she is also positive for cmv, and she is taking meds twice a day for that. she just finished 10 days of antibiotics for her second urinary tract infection. she is probably getting these because she is still in diapers. hopefully that will stop soon.

needless to say, we are very worried about our daughter's ability to fight infection of ANY kind. we can't keep her in a bubble and never allow her outside of the house, but we are going to have to make some more changes to keep her better protected until her white count gets a little higher. we are flying next week for the holiday, and i wish she would wear a mask but i cannot hold it on her face for 6 hours.

so we are trying our best to protect our little walking petri dish, but apparently something more has to be done. please pray for our baby's health.

hey everyone - i just enjoyed my first real weekend off. we spent our time getting things in order. shopping, cleaning, etc. ashley has enjoyed christmas shopping so far. we have to start early because when we go to michigan in november, we celebrate thanskgiving and christmas (harry thanksmas) together with julie's family.

ashley's biopsy came back negative. NO REJECTION. this is great news. so, we are now in the process of switching from prograf to a different immunosuppressant. hopefully this will continue to protect her new kidney. she has been sick with cold-like symptoms, and very low grade fevers, but has been acting fine. she also has another UTI, for which she is on antibiotics. i suspect once she is no longer in diapers, the UTIs will stop. speaking of potty training, ashley got her first big girl potty yesterday and peed THREE TIMES in it yesterday! we were so excited and proud, as any parent can relate to. daycare was less receptive of this news because she is not walking yet, but so what? she understands the concept and is eager to progress. so we are thrilled and will continue to help her acclimate. we are also phasing out her pacifier, which is something we allowed her to keep because pre-transplant, she ate nothing by mouth and her suck reflex was the only intact reflex ashley had when she came to us. however, she is becoming a "big girl" and she is slowly warming up to the idea of being "big."

yesterday, we were looking through photo albums and i was pointing to people and asking ashley, "who is this?" she did not answer one question correctly. she was making up words as her answers, even when i pointed to myself or julie. i sighed and said "you just don't understand the concept of who people are. i'm suprised you even know i'm your parent!" to that, ashley promptly picked up the album, opened it up, and flipped through every page, pointing and correctly identifying every person enthusiastically. flabbergasted, i yelled, "you know what i'm talking about?! i thought you were just stupid! (laughing)" and that child said "noooo....i funny!" julie and i almost fell out of bed laughing. she is just too much sometimes.