Visit Katia's Homepage (updated often with news and pics)

On January 15, 2002 our daughter, Katia Solomon, fell and hit her head on the frame of our bed. It swelled some but not as much as we expected by the strength in which she hit her head. An hour or so later, we left and went to church and all went well. By January 26th (her 2nd birthday) the fall was in the back of our minds as though it had never happened...

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Feb. 21, 2002 Appt with Dr. Siddon because Katia's right eye is swollen. Dr. Siddon believes it to be allergies and prescribes allergy medication.

Feb. 25, 2002 Appt with Dr. Siddon and Dr. Preston. Eye still swollen, more so. Maybe eye infection. Prescribed antibiotic drops and an x-ray to make sure no small fractures are there from the fall. There are x-rays of the orbits. Look clear. This was done at Tower Diagnostic.

Feb. 28, 2002 Appt with Dr. Preston. Wants her to see Dr. Williams and optometrist. Called but appointments are weeks away. I decide to take Katia to Town N Country ER because her eye really looks like it is being pushed out and I want to have a CT done of her head immediately. They do the CT, spend all afternoon there, but the CT "shows nothing". Dr. William's office calls me back with a sooner than later appointment after I expressed much urgency in the matter.

March 7, 2002 Appt with Dr. Williams. She sees Katia and sends us for an MRI STAT. I feel the urgency by the way this is ordered. We go straight to Bay Area Imaging where Katia is giving something to make her go to sleep and have the MRI done of the orbits. Katia wakes up with some labored breathing and her oxygen level a little low but she becomes much better right away. Someone from Dr. William's staff is there to take back the films to her right then.

March 8, 2002 Dr. Williams called and said the MRIs showed a large mass, possibly lymphoma She stet up an appointment for Dr. Slonim and Dr. Older in Tampa for that afternoon.
We go to see Dr. Slonim and Dr. Older. They doubt it is lymphoma but they aren't sure. They are taking this very seriously and making some phone calls. The say Dr. Gross is the best to see her. Dr. Slonim and Dr. Older look at the different films from past Cts and X-rays. This day we see the CT from Town and Country hospital. I see then that it was so obvious there was this mass in her head just 8 days before. Who looked at these films and said they were clear?

March 11, 2002 We go to see Dr. Gruner (Dr. Williams set up this appointment) at St. Joseph Children's Hospital Oncology Ward. She looked at the films and scans. I wonder why we are here at the oncology center?
In the afternoon we drive up to Ocala to see Dr. Gross. He looks at Katia and her films and schedules an appointment for an ultrasound and biopsy at All Children's Hospital for March 15, 2002. He doesn't act too concerned but doubts it is cancerous. Today was Myron and my 14th church wedding anniversary:)

March 14, 2002 ACH in St. Pete pre-op MRI for Dr. Gross 8AM. Put to sleep for procedure.

March 15, 2002 ACH for ultrasound and biopsy. Ultrasound was done but biopsy was cancelled due to all the blood vessels. Dr. Gross wants an angiogram done by Dr. Evans at Tampa General Hospital.
March 22, 2002 Angiogram done at TGH by Dr. Evans. He sees it as a hemangioma which is what Dr. Gross had said. A hemangioma is a tumor of blood vessels. Non-cancerous. He says he will call Dr. Gross.

March 25, 2002 Take Katia to Dr. Preston because of bumps appearing on her back around her trunk area that look like bug bites. I am worried because I know they aren't bug bites. I have watched these appear over time and go away on her. Gave Promosone to apply to the bumps.

March 28, 2002 Take Katia to Dr. Preston. Still has bumps plus there are more. Doesn't know what is causing them but she says it just looks like some type of bug bites.

April 2, 2002. Go to Dr. Gross in St. Pete. Examined eye and is trying to schedule an embolism (to cut off circulation to the tumor) ASAP with Dr. Evans.

April 3, 2002 Dr. Preston suggested we see Dr. Habal, a plastic surgeon to discuss Katia's eye so we see him. He suggest the tumor be removed. Think about it and talk to the radiologist about the pros and cons of the embolism.

April 4, 2002 Met with Dr. Evans to discuss the embolism pros and cons. Says the embolism is best move for now. Has less than 1% risk of causing larger problems. THIS IS WHERE I FEEL GOD STEPPED IN AND HELD OUR HAND. THIS DECISION SAVED KATIA'S LIFE. If we had gone ahead with the plastic surgery and not had this embolism... Procedure set for April 11, 2002.

April 10, 2002 Met with Dr. Habal to discuss meeting with Dr. Evans and our plan to go forward with the embolism. Set appointment for April 17th to discuss further action for plastic surgery.

April 11, 2002 TGH at 6AM for the embolism procedure with Dr. Evans. Procedure went very well and Dr. Evans tell us he is very pleased. Keep eye out for swellinhg and bruising (which will occur since the blood source has been cut out). Katia to spend night at TGH and go home tomorrow. Night went well. Wet diapers, decent eating and temperature and blood pressure all good.

April 12, 2002 Met with Dr. Evan's partner who looked at Katia and examined her. Said she looked good. Released and told to use Tylenol for fever. Left around noon. Ran into accident traffic on interstate. Katia was very cranky. Got home and around 3PM Katia started feeling bad. I gave her tylenol and called Dr. Evans when the fever reached around 101.0 and some bumps appeared on her neck that evening. Said the anestesia could cause the fever and headaches. Call pediatrician if fever continues. Katia had a rough night with a fever around 102.0. She was crying and saying, "OUCH" a lot!

April 13, 2002 Took Katia to TGH ER due to a lot of pain, fever and bumps. Saw Dr. William Brown. Took a spinal tap and found menengitus. In urine found a UTI. WBC count was 48,000 (well above normal). Admitted to Pedi Ward #F512. Had fever throughout the night up to 102.0. Ate some fries but very low activity level. Had nurse Anna throughout the night.

April 14, 2002 TGH admit. More blood test run. WBC 77,000 (big increase). Fevers continue. Cultures from spinal not back yet. Dr. Lynn Ritenberg feels it may be viral menengitus. Confused how she could have gotten 2 infections so quickly. She called Dr. Preston and I talked to Dr. Preston to update her.
Around noon, Katia perked up and had some fries. Activity level very low and she is tired.
Around 4PM She had more fries. She is asking for bottles of milk but won't drink them.
Dr. Statler says an Infectious Disease Doctor will come by tomorrow. Says this is not a "by the book" case. They add 2 more antibiotics to her I.V. Zovirax and Vancomycin. Zovirax is for herpes and the Vacomycin is for infections. Fever finally breaks around midnight to 97.9.

April 15, 2002 Met with Dr. Irizarra. Still waiting for some culture results.

7:00 AM Met with Dr. Dubious (Infectious Disease Doctor). He examined Katia. Will see the results from the blood tests and get back with us.

9:45 AM Team of doctors come in to see her with Dr. Irizarra. Staying on antibiotics she is currently on.

Day turns very bad!!!

1:00 PM Dr. Rittenberg and Dr. Irizarra came in to inform me that Katia's spinal fluid and blood showed signs of LEUKEMIA!!!! An immediate transfer to All Children's Hospital is currently underway. We will go by ambulance.

3:00 PM Left to ACH via ambulance. Assigned to room #268. I felt numb and confused and I just wanted my baby to feel better. She was crying and crying in the ambulance on the way. I was just looking outside thinking our lives just changed! I felt so different all the sudden. Our nurses at ACH were Mary Anne and Jennifer. Dr. Kerr saw Katia. We got blood set up and had blood tests run. There was a lot of people in and out of the room. She had a new IV put in and was put on Allopurinol by mouth and Ceftazidone via IV.

9:30 PM Done with tests for the day. A lot of people have talked to us and given us a lot of info. Still I mainly just heard LEUKEMIA at this time. Tomorrow she will have a bone marrow test done to find out which type of Leukemia she has so they know how to treat her.

April 16, 2002
6:30 AM. Blood work drawn Bone Marrow Test to be done in the morning. Signed papers for research programs.
10:00 AM Bone Marrow, Spinal and blood test done. Waiting for results. Dr. Grana comes in and says there are 2 types of Leukemia. ALL or AML. ALL is more common and AML is worse and harder to treat.

1:00 PM Dr. Grana comes in and tells us Katia has AML, the worse one. I fell apart after I heard her out. I just fell apart. I went and looked at Katia who was asleep and just wondered what I was supposed to do. How did this happen? Was she going to die? Was there any hope for her future? I just felt like I died inside right then and there.

Scheduled for tomorrow. EKG to check Katia's heart to see the condition before chemo can be started. A Double Broviac will be surgically implanted tomorrow to receive chemo through. They will then take the IV out of her arm. Chemo will then be started once broviac is in place and EKG results are back.

April 17, 2002

6:00 AM Had bloodwork done
9:00 AM Had EKG done.
12:00 PM Surgery to have broviac put in and a lumbar puncture done.
2:00 PM Surgery went well
4:00 PM Started chemo drugs
Zofran for nausea, Idarubicin, ARA-C, VP16, 6TG, Steroids.
This is the induction phase and will last about 3 days.

April 18, 2002 Night went good. Chemo still going in broviac and by mouth. Got haircut last night and a bath. Started video taping her last night. Plans to day is chemo without other procedures.
Walked in hallway with daddy and sisters. Had a good aftgernoon Drank a full bottle, ate some fries and cookies. Became somewhat cranky around 9PM. Seems constipated. Asked nurse about stool softner.

April 19, 2002 Met with Linda and handed in some paperwork. Met with Edna and went over treatment map and had chance to ask questions. Katia threw up this morning so now she will have one of her meds put throught the Broviac instead of by mouth. She has been cranky and had no BM for 3 days. Given soemthing for stool softner. Drank one bottle of 6ozs.. Ate a few cheerios. A lot of people have been coming by and I seem to handle the company well and talk to people but inside I am really torn and confused and for a very rare time, I don't know what to do.

Hair starting to shed a little. Had a bad day. Very sore and irritated. Eye is very very bruised and swollen looking. Won't eat but maybe 15 Cheerios and 7 ozs of milk, a few bread bits. Hope tomorrow is better.

April 20, 2002 Today Katia had a full serving of Strawberry Cream of Wheat with some sugar and syrup. Took a mid-morning nap. Had a birthday cake with family and friends for Katia. She loves cake. Afternoon didn't go so well. Katia was very moody and sore. Took morphine but still very withdrawn and very overwhelmed by visitors and activity. Took a good while to calm down and sleep for the night. She slept good.

April 21, 2002 Ate cream of wheat for breakfast and oatmeal in the afternoon. Some bites of bread and 3 ozs of milk. Went to sleep around 9:15 PM. Low blood counts means she needs a transfusion of blood. Started transfusion around 10PM. Could have a bad reaction so I watched her the whole time over 2 ½ hours. She is type O+. Transfusion went well without any side effects.

April 22, 2002 Katia has more color today thanks to the blood transfusion. Woke up in a good mood, ate oatmeal, talked good to Nurse Amanda and Kim, the Childlife Specialist. Still hasn't had BM.
1:25 PM HAD A POOPY!!!
Had Chicken nuggets for lunch.

April 23, 2002 Went to Ronald McDonald House for a few days between chemo treatments. We were put on the 2nd floor. Each person has a "chore" to maintain the RMH and mine is vacuuming! That is therapy and "normal" to me. I appreciate the chore. The room is nice like a motel room. Big kitchen downstairs, livingroom areas, playroom and big back yard. Place looks very clean which is good because Katia is now immune supressed which means she can get infection quickly and end up back in the hospital for a fever.

April 24, 2002
10AM Spinal Tap done at the clinic, OUTPATIENT. Had to get platelettes cause her count was low. Platelettes are what enables your blood to clot in case you get hurt. If they get too low a person can bleed to death over a small bump or tear. Platelettes could cause fever, which would be reason for admit, but Katia does fine and we are back to RMH at 3:30. The staff is great at the RMH. My vacuuming chore is a long hallway on the second floor. NICE! Let me explain. I vacume all the time at home and love it. Since our world basically fell apart on April 15th, I haven't been home to vacume. I miss that because vacuming is soothing to me. I think the RMH does this on purpose to give people a true since of home not a hotel. Home health care nurse came to show me how to clean Katia's broviac out everyday.

April 25, 2002 I flushed Katia's broviac for the first time today (the nurse was there just in case). We stayed at RMH for the day. Katia's pee looks somewhat brownish.

April 26, 2002 Went to clinic around 10AM and admitted to hospital to start next part of Induction chemo. Chemo was started around 1:45 PM.

April 28, 2002 Yesterday Katia was very grumpy most of the day and then walked around and played in the alted evening. Threw up a lot around 9:30PM. Woke up a lot during the night. This morning Katia seems less grumpy but not happy. She drank 6 ozs of milk at 5AM, ate her oatmeal at 8:30 AM and threw up some around 9AM. Her meds right now are;
ARA-C
Etoposide
Daunorubicin
Zofran
Dex
Septra
Diflucan
6TG
April 29, 2002 Had platelette transfussion. Good day. Mommy went to Tampa for the first time today. Stayed for a few hours.

April 30, 2002. Should finish chemo aorund 8PM and have a blood transfusion afterwards. Plans are to go back to RMH tomorrow. A lot of hairloss last night and some today. 50% of hair is gone. This is day 15. About 50% of her hair is gone now. Plans are to return to RMH tomorrow:) She had a lot of hairloss during the night and today.

May 1, 2002 Went to RMH, had a decent afternoon but Katia was very cranky at night with small fevers between 37.5 - 37.7. Called Dr. Rossbach. He said if it got to 38.3 to call back. Fever never rose past 37.7. Slept good throught the night. Broviac flushed fine.

May 2, 2002 Not a good day. Played a little but seemed very low on energy. Had birthday cake at RMH. She ate a whole plate. Ate a toddler meal and had 2 bottles throughout the morning and afternoon. Still maintaining small fever of 37.7. Home healthcare nurse, Fran, came by around 7PM to give first GCSF meds in broviac. Broviac wouldn't flush so we went to the ER around 7:30. While we waited we watched "Survivor". That is something we have watched since I was pregnant with Katia and it really gives me a "normal" feeling to continue watching it. Broviac was cleared and GCSF was given. Home around midnight. Katia slept good. Drank 7 ozs around 6AM and 5 ½ ozs around 8:30 AM of milk.

May 4, 2002 Still has fever of 37.6 in morning. Has clinic appt. Temperature at clinic was 38.5. Admitted to hospital at 4NW (no rooms in 2 SW) Myron and I feel some lumps on the back of Katia's neck. Katia in a lot of pain. Given mrphine around 5PM and 10PM. Maintaining temperature still. Given Tylenol around 5:30 and 10:30 PM. The nurse called Dr. Rossenbach and Katia is now on antibiotics. Temps at time around 38.3. By 10:45 PM had risen to 39.8 started going down around 11:30 to 38.9. Talked with Nurse Lee about our concerns of abdominal pain and urination pain, ear pain and lumps in neck. She noted it for Dr. Rossbach. Went to sleep aorund 11:45 PM bgut keeps jumping as if startled still aorund 12:00 AM *NPO*
Fever ran througout the night, Dr. Rossbach came in around 11:30AM and said to change her antibiotics put her back on diflucan, probably had mouth sores from mouth to rectum. Keep her NPO throughout the day. May need ultrasound if abdominal pain continues. Fevers ran on and off.
12:35 AM 38.8 4:00 AM 39.5 6:00 AM 37.7
7:45 AM 39.1 8:10 AM 38.7 8:30 AM 38.5
9:20 AM 38.1 10:20 AM 37.3 11:55 AM 38.6

May move back down to 2SW :)

May 5 - 10
Did move back to 2 SW:) Fever went down and stayed down after a change in antibiotics. All cultures came back negative. Taken off of one antibiotic on May 8, and the others on May 9th to see if fever came back. Didn't come back. On May 9th she started coughing and gagging on "mucus". Spit up in blankies. Told Dr. Rossbach on May 10th. Kept eye on her till around 11:00 AM. She ate some cheerios and a popsicle. Left to RMH around 11:00 AM. Bathed and ate some cheerios and napped all afternoon. Temperature went from 36.9 - 38.5 by 4:45. Called and talked to Dr. Grana around 5:30PM or so. Sent back to hospital to be admitted and put back on antibiotics. Temp at time of admit 38.3.

May 11, 2002
Started developing a rash on her back and right shoulder. Fever stays between 37.7 - 38.2. Has dropped to 36.0? She hasn't taken any Tylenol. Fever goes down on its own. Had stitches removed from the Broviac yesterday. Thump looks infected this morning. This thumb has looked bad since around mid - February. Seems now that her counts have been knocked down by chemo, the thumb looks worse and infected. Bandaged up so she can't suck it. Will talk to Dr. About it when rounds are done.

May 12, 2002 Counts = Blood counts; HGB 8.8, PLT 47, ANC = 0

May 13, 2002 Counts = HGB 7.0, PLT 25, ANC= 0

Asked Dr. Why it dropped so much. Said probably because of fevers. Fevers eat platelettes. May have viral infection. Rash looks better right now. Still there but lighter in color. Dr. Rossbach came in for morning rounds. No talk of leaving hospital or stopping antibiotics. Appetite and mood OK today.

May 14, 2002 Discharged from hospital to RMH. Blood counts rising on their own. PLT counts from 25 - 27. Had blood transfusion during night.

May 15 and 16, 2002 Spent 2 lazy days around RMH. Has appt at clinic tomorrow to check ANC. We hope it is around 400.

May 17, 2002 ANC=4500!!!! Back in hospital for more chemo on Monday.
WBC 9.8, HGB 9.3, PLT 8.6, Taken off GCSF

May 18 and 19, 2002 Went to Tampa WITH KATIA for a short visit. Did well. Slept OK each night at RMH. Appetite very very good!

May 20, 2002 Back at ACH around 3:30PM and started Consolidation Chemo I
VP16, MITO, ITA

May 21 and 23, 2002 Chemo continued. Tempermental. Dr. Rossbach believes it may be caused by the VP16. Hair growing and not falling out?

May 24, 2002 Sent home. Went home to Tampa!!! Tempermental and not feeling well. No fevers and good appetite.

May 28, 2002 Clinic appt. CBC panel counts
HGB 7.9, PLT 148, ANC 0, Started GCSF and a transfusion for blood scheduled tomorrow

May 29, 2002 Appt for blood transfusion went well. All vitals good and no fevers. Went home from clinic:)

May 30, 2002 Quiet day at home. Appetite great, no fevers all day. Septra day. Septra is given 3 consequitive days each week to keep Katia from getting too many bacterial infections. Diapers seem good. Took a nap and seemed a little "puny" feeling. Around 9PM felt warm 37.7, 9:30PM 37.9 (I start packing...) 10:00 PM 38.5, 10:15 PM 38.4. Called Dr. Ayala and she said to bring her in for admit. Arrived around 11:30PM

May 31, 2002 Fevers remain throughout day. On antibiotics. Fevers stay between 37.2 - 39.3. Fever continued througout the night and diapers are diarrea with a lot of mucus? Sent to lab. Got Tylenol in the middle of night.

June 1, 2002 Feeling very sluggish in the morning. I feel a lump on the back of her head. Diapers are still runny with mucus and smelly. Nurses Amanda and Allison during the day. Katia seems pale. No CBC panel was done in the morning. Katia looks pale to me. Diapers test positive for C-DIF. Started Flagyl by mouth. Appetite okay. Flagyl 4 x's a day.

June 2, 2002 Doing better. Fever finally gone. Appetite good. Cranky. Peeing seems to hurt. B.M.s seem to really hurt.

June 3, 2002 Rt. Eye swollen? Talked to Dr. Rossbach and he will check it again in he afternoon. The swelling of her right eye had gone almost totally away after induction chemo. Cries when she pees so urine is being checked. Bagging her for a urine sample seemed impossible but finally was accomplished. No diaraeh or dirty diapers as of noon. Throwing up @ 12:30 PM. Continued crying with B.Ms and urine througout night.

June 4, 2002 Katia is still having a lot of pain with bowels and pee, a LOT of pain! The doctor was wanting to send her home yesterday but she wasn't drinking, she had the pain urinating and having bowel movemnets. Her potassium levels were low and she couldn't keep the pottasium by mouth down. The resident this morning said there was some type of bacterial and chrystals in her urine. No real explinations or reasons given. She off all antibiotics except Flagyl by mouth for the C-DIF. I am lost as to what is going on because of real communications problems with me and the doctors.

June 5, 2002 Expecting to go home today but I have questions for the doctor, Dr. Rossbach.
1. What is causing the BM pains? Could be cramping from the CDIF
2. Could there be any obstructions? Not likely
3. When is next chemo scheduled? When counts come back up
4. Do we give the GCSF at home? Yes
5. Pain meds at home? Codeine

June 13, 2002 Went to clinic appt. Katia was still in a LOT of pain with bowels. No fevers. Good appetite. Admitted to hospital after she was seen screaming over her bowels. They want an MRI done to check her rectal area. I really think this needs to be done.

June 14, 2002 MRI shows absess. Eye tumor much smaller (an MRI was done to check that also). Katia will be kept on antibiotics throughout this admit.

June 17, 2002 Discharged to go home but staying on antibiotics at home.No more pain right now with bowels.

June 18, 2002 - June 20, 2002 Doing good at home. On Cipro antibiotics, septra, diflucan, GCSF. Very good attitude and appetite.

June 21, 2002 Admitted for chemo. ARA-C 2 times a day. Ran fever on 2nd day. Started antibiotics. Fever went down during night.

June 26, 2002 Came home, still on Cipro twice a day, GCSF, Diflucan, Septra. No fevers and no bowel movements since Monday (June 24)

June 28, 2002 Clinic visit today. Still no bowel movements as of noon time.

June 30, 2002 Went to 2SW ACH to see Dr. Grana. Katia seems to be in so much pain and not pooping so we called and Dr. Grana said to bring her up to the floor to see her. Within 10 minutes after we arrived, Katia had bowel movement:), then Dr. Grana came walking around the corner. Dr. Grana called in more Lactulose (stool softner which Katia has been taking alot). Keep her on the Lactulose 2 Tsps 4 times a day.

July 1, 2002 A lot of bruises!!

July 2, 2002 Clinic appointment. Plt. Low and blood counts low. Got both transfusions, 6 hours!

July 3 and 4, 2002 Doing well at home. Took some pictures today and Katia was having fun. Bowels still painful but not having them often.

July 5, 2002 Complaining a lot about her back and keeps saying, "poo poo" like she has gone but she hasn't. Not peeing much at all. One wet diaper a day.

July 8, 2002 Called to make appt for July 9. Katia very irritable most of day and night.

July 9, 2002 Clinic appt. Dr. Barbosa admitted her after she was screaming in pain so much. Scheduled MRI for bowels tomorrow.

July 10, 2002 MRI cancelled until July 11 because they want to include the spine which means a change of orders. NPO after midnight

July 11, 2002 Hadn't eaten or drank since 8:30 PM (NPO) Had bad morning with a lot of pain and a lot of crying!! She has a roommate right now in a lot of pain too so each of them were keeping the other awake. By noon she was just going "crazy" pushing the pillows off the bed, throwing her blankies down, screaming and ripping the sheets off the bed. She is starving and wants a bottle and pancakes. Still no word of when the MRI will be today. Nurse Amanda is trying to speed things up and they are trying to transfer out the other patient to another room. At 4PM, I make sure the MRI is even going to be done today. Katia is very very mad and in a lot of pain. She is 2 ½ and doesn't understand why I won't let her eat! FINALLY, MRI at 5:15 PM. Finish around 7:15PM Patient in bed A was moved out and night went a little better after Katia finally ate and got some medicine.

July 12, 2002, MRI showed a LOT of "bowel swelling". Dr. Dubois came by (infectious disease) and the gastrologist suggest colonoscopy, endoscopy, more laxitives, stool softners, et. No real answers. She had 3 very apinful bowels movements following numerous doses of magcitrate.

July 13, 2002 Not too bad of a day. Took a good nap. Appetite stays good. Had a rough night with a lot of "poo poo" complaining. Takes all her medications fine. Seen by Dr. Grana and Dr. Barbosa.

July 14, 2002 All morning was spent complaining of "poo poo" and "rub my back". Finally had a bowel movement at 8:40 AM and another one after a dose of miralax at 10:40 AM. Both were very mushy. Peeing OK thoughout night before and day. Dr. Dubois came in and said that the labs show the C-DIF again and no signs of "good bacteria". He is putting her on a different antibiotic and a type of bactieria replacement supplement to put in her food. Resting for a nap @ 12:30 PM Seen by Dr. Barbosa and Dr. Grana but NO "butt checks". Katia hates everyone having to examine her rectum. She tries to act like she is asleep when Dr. Grana comes in the room and really gives the doctors a hard time.

July 17, 2002 Still in hospital. Pain better yesterday but worse today. GI came in and looked at her bottom. Sore seems gone but not sure about internal inflammation. No word yet about going home. Talked to Dr. Rossback about Bone Marrow Transplant. This subject was just dropped since the beginning and I didn't really know what the plans were. To do this or not? Dr. Rossbach says since no siblings match, chemo gives more chances of 5 year cure rate. If after chemo completes and she relapses then a Bone Marrow Transplant would be a must but not now. Dr. Rossbach seems to be taking more time to talk and explain to me since June when I got really upset being "ignored!"

July 19, 2002 Morphine turned off. Katia complaining "poo poo" when there is none. I think she is feeling very full and the need to poop. Has had 3 dirty diapers with less pain than previously but still having pain. Pushing morphine button every 15 - 30 minutes. Should see GI doctors today. Appetite bad yesterday but better today. Heartrate staying higher today than yesterday.

July 21, 2002 Still in hospital. Pain seems 3 on a scale of 1 - 10. Lots of dirty diapers yesterday, 10 I think. Today she has had 5 so far. It is just 2:45 PM Had 2 more dirty diapers @ 5:00 and 6:00 PM. Total so far 7. Diapers sound like they squirt out but they aren't totally liquid today. They sorta have the consistency of moist dirt. No blood, little mucus, not too too smelly.

July 22, 2002 Pain seems to be gone. Has quite a bit of dirty diapers that squirt out. Took a good nap, played around some. Should be ready to home. They will want her back for chemo soon.

July 23, 2002 Dr Rinestine came in around 6:50AM. Asked a few questions but that was it. Dr. Rossbach came in and said she could go home tomorrow and come back Monday, the 29th. Seems to have no pain.

July 26, 2002 Clinic appt. ANC 17,000! Stop GCSF!!! Was 780 on the 24th.

July 29, 2002 Clinic appt. For admit. Started chemo (VP16 and MITO). Chemo will go on until Friday just one time a day each drug. Each day, chemo can move up by 4 hours. Given zofran to prevent Nausea. Nothing by mouth after midnight.

July 30, 2002 Scheduled spinal and MRI of orbits. No food or drinks. Spinal done at 10:30. Went well. Performed by Dr. Rossbach with Amanda and Frances. MRI scheduled around 11:30, moved to 12:15. It went well. Katia was back upstairs by 1:30. Results tomorrow.

July 31, 2002 Dr. Rossbach says bone marrow looks good and MRI he thinks just shows scar tissue but has only read written reports. No radiologist there to help read films. Katia has been vomiting last 2 days. Seems gaggy. Given benedryl. Questions I have:
1. Why does her breath seem so strong?
2. Bone Marrow Results, any blasts cells?
3. C-DIF? Is it gone?
4. Bowel movements? One on July 28 and on July 31?

Stool lab was sent to check for the C-DIF.

August 2 Katia seems to be very gaggy and is not keeping her oral meds down. Her attitude is good and she is ready to go home today. Discharged after Dr. Gross came in to look at her ye. He says the tumor is about half the orginal size in her right eye socket. Wants to do a biopsy. We must wait for her counts to go back up before surgery. This biopsy was planned for March 15, 2002 but never happened.

August 6, 2002 Went to clinic. Saw Dr. Grana. Katia's CBC was good but ANC=0. Her blood pressure was high for some reason. Dr. Grana talked to us about the biopsy. If is shows no leukemia then they may or may not opt to remove it. If it shows leukemia then the options are radiation, change in chemo, bone marrow transplant, etc. We will wait to see.

August 9, 2002 Clinic appt. Katia has been having a lot of pain last 2 days but at the clinic she really started crying a lot more and more often. The she lost it it and screamed for over 10 minutes straight, shaking. She need blood and platelettes so she got those and then was admitted to the hospital around 5PM. Started on 24 hour morphine with 20 minute injections. Note: Rob cam in and I found out he had relapsed from the BMT around August 7. He is another Leukemia AML patient, 18 years old. He had a transplant in June and was doing very well but now he is back. I hate to see this. I have really gotten close with him and his mom, Jane.
Katia will be on 2 antibiotics. Clindamycin and Fortax via IV

August 12, 2002 Still in hospital. Morphine seems to be holding back pain. Hasn't had any bowel movements since in the clinic on the 9th so can't judge the BM pain. Narcan drip seems to be set right to control itching. Appetite good and peeing regularly. Started vancomycin antibiotic around 9PM orally. Dr. Kerr came in around 3PM and said labs look normal, so far. Counts may take a while to come up. I had wondered why they weren't coming up even while on GCSF. As far as the biopsy we wait for counts to get to at least 500. Dr. Rossbach on board but no doing rounds? Zack passed away at 1:45 AM. Zack was a 15 year old with Leukemia ALL that had been quite sick for some time. They lived down the street from us. Me and his mom Patty had talked on and off.

August 13, 2002 Katia's counts are still 0. WBC count went from .45 to .62. That is good:)

August 14, 2002 WBC count came back down? Asked Dr. Kerr about that. She said it would bounce up and down because she is sick. Also CBC said, "occasional lymphcyte seen on screening film"? Dr. Kerr says that nothing to be alarmed about, it is just because the WBC is so low. Another question I thought up. "If Katia had an embolism (she did) then is the chemo even getting to the tumor in her eye or is it blocked since the blood supply is blocked to the tumor?" Dr. Barbosa said the chemo can work in other ways and should be reaching the tumor also. ???

August 15, 2002 Received platelettes (type B?). ANC up from 0 to 43:) Not sure when we are going home. Pain seems better. Still on morphine but less and not pushing button. Dr. Grana is out of town so Dr. Kerr is on the floor.

August 17, 2002 Still in hospital. Off of continuous morphine. Still has her button to push. Counts of ANC is at 50. Dr. Ayala says she needs to be here a few more days till her counts go up. I asked why the GCSF isn't bringing up her counts like it usually does. She said when the bone marrow is ready (measured by the "monos" in her counts) then her counts will start coming up. Waiting for the WBC to at least reach 1.0. Right now it is .63. They keep going up and down. Katia seems to be getting "gaggy" again. It is almost noon and she hasn't eaten or drank anything?

August 19, 2002 Scheduled MRI to look at bowels and abdomen, etc. MRI @ 8:45 :) Dr. Barbosa says there's a lot of bowel stored up and the bladder was full. Put her back on Miralax. Counts, ANC=286. Few more days according to Dr. Ayala.

August 20, 2002 Dr. Ayala said maybe tomorrow. ANC=243 but that is okay. She would like the ANC to be 500 to go home. Bands and segs fight infections. Once "monos" start going up, counts go high and counts should be 1000 for the biopsy to get done.

August 21, 2002 Went home!! Stay on Miralax until bowels seem cleared out. Will schedule biopsy with Dr. Gross. Today is my birthday and I am just so glad to be home with my family all together and I get to sleep in MY BED!!!

August 29, 2002 DAY OF BIOPSY. Platelettes needed at clinic before surgery. Arrived at 8:00 AM to the clinic. Report to Short Stay unit of hospital. Biopsy is scheduled for noon. Went by admissions to pick up mail for Katia. She had A LOT of cards waiting for her and some packages. She also had a FEDEX package with a very special necklace inside from someone anonymous? Biopsy time has been changed to around 2:00 - 3:30 PM. Dr. Gross says an he should be able to go in through the eye socket without making an incision.
Dr. Gross came out and said he did have to make an incision on the eyelid. It was difficult but he was able to get three small pieces for biopsy tests. He also says the tumor is wrapped around the optic nerve so it cannot be removed. We should get the results of the biopsy in a few days but he feels the surgery went well.
I went to recovery and was "shocked" by how big and bloody Katia's eye looked. I didn't expect that. She was very clingy and sore and had a few problems waking up, needing some oxygen . They are trying to get a room on 2 SW but are having a lot of "communication problems". Stayed in recovery for over an hour just waiting for 2 SW to get her bed. They should have had her bed because this was a planned surgery. Before leaving recovery she was given Verset for pain and will be getting Tylenol throughout the night for pain. Her eye looks really bad right now!

August 30, 2002 Katia's eye is still a mess. Very big and bulgy. I am putting antibiotic ointment on the eye so it doesn't get infected or sticky from bleeding. The bleeding seems to have stopped. The whole top of the eyelid has stitches going all the way across. May get results today:) I am sooooo nervous though.
RESULTS ARE GOOD AND WE ARE GOING HOME!! Katia has some "Boo Boo arm braces" on so she can't touch her eye or accidently rub it. She is really getting frusterated with her eye. We did go to the playroom for awhile while we waited for results and she was up and playing with the little kitchen set. Even though she couldn't bend her arms, she was playing and quite happy. Most people (patients) didn't know Katia had surgery and they keep thinking she had an accident. Her eye does look bad but she seems to be okay with it. She did finally see it today and said, "oooohh". That was all. At least she is young enough to not be bothered by her appearance. Her head is very shiny bald and now her eye is all messed up but Katia is all smiles. We are happy to be going home but I am just praying she stays okay and doesn't run fevers or get her eye hit somehow. Left to go home around 5PM.

September 3, 2002 Appt with Dr. Gross in Palm Harbor. Good report. He will remove stitches Friday at ACH around noon.

September 4, 2002 Clinic appt for possible admit for LAST chemo!!! Katia's bowels are really hurting her though. Has small sore on her rectum. Dr. Rossbach says she can have her chemo. Admit around 1:30 PM 2SW. Didn't start her chemo though. Put her on Morphine pump for the pain. Button only but can be pushed every 10 minutes. Rough evening but fine night. D/C Miralax.

September 5, 2002 Dr. Grana says to start the chemo. ARA-C. Katia's morning is good. Getting cranky around 10:30 AM?

September 6, 2002 Katia is on her chemo and starting to get nausaus. Appetite normal. No B.M.s but she had her stitches removed and the eye looks much better. Just has a little sticky tag on it like a small piece of tape but it looks so much better!!

September 7, 2002 LONG DAY!! I don't like being all the way down the hall. We are really in 2NW but are tended to by 2SW which means they have a long way to come to check on us so they don't come very often. Chemo is going fine. Eye swelling is going away. She is still on Miralax.

September 8, 2002 Katia pulled tape off her eye but the eye looks fine, just a small "scrape" looking line. The chemo is running. She didn't sleep well last night. She seems uncomfortable. Taking miralax but not having any bowel movements.

September 9, 2002 Chemo as scheduled. Katia still has had no dirty diapers. Appetite is good but she is not peeing much?

September 10, 2002 Last chemo to be given at 1AM . Asked Dr. Grana about "What is ahead?" No more spinal chemos to be given. GCSF continue 10 - 14 days. Septra for 6 month till immune system seems normal. Diflucan for 1 more month everyday. Spinal tests will be 2 months, 6 months, 9 months. Clinic visit 2 times a month until blood is normal and then once a month after that.
She has still had no bowel movements. Miralax is being given 5 times a day. Took forever to get the 1st dose, not until 11:30 AM so the next 3 doses were taken close together. We went to the treatment room and had a suppository but nothing happened.

September 11, 2002 Still has had no bowel movements. Miralax not started till 1PM!!! Supposed to have 5 doses a day but the doses keep getting slowed down because of either the nurses or the pharmacy not getting them to me quickly enough. She ended up only taking 3 of the doses.
FINALLY in the evening she had 2 dirty diapers (41mL and 151mL) very runny though. Dr. Grana said the nurses said the stools were hard???? Given suppository again before bed. Scheduled MRI for tomorrow to look at her bowels. One of the nurses said that Katia's insurance is giving a hard time about her still being in the hospital? That just seems odd to me. Katia had an enema in the treatment room around noon. She did not like that at all and it did nothing!

September 12, 2002 Katia was NPO all morning to have an MRI done. Then I hear the MRI wouldn't be done until later in the afternoon? THEN I hear that the MRI was cancelled and we are being sent home!!!! Katia came home in a lot of pain with no answers and now I am really upset. I am waiting for home healthcare to come by and bring my supplies. Katia is still having a lot of bowel pain and I really wanted to find out why and how her bowels look. Are they full? Are they swollen? THEN I get a call from LifeCare Solutions (home health care) to say that they are unable to fill the prescriptions for Katia that they were supposed to deliver today because of "INSURANCE PROBLEMS"! I called the hospital to talk to Edna who deals with all of that. She said she will have to talk to Linda, the social worker. I have called CMS 1-727-893-2775 (I just transfered from Physicans Healthcare whom I had NO problems with to CMS because I was told they were better to deal with children with terminal diseases). I was told to call the Tampa office. Now I really feel like I am being pushed around and the day is going by and I really need Katia's supplies! Tampa office 813-356-1300 says the case worker for Katia is Dena Gay. Called her at 631-5009. Left a voice mail saying this was URGENT. I also called Urgent Care at 272-2761, transfered to another voice mail. Bobby Crow called me back. Katia was D/C from PHP as of 7-31-02 but was not showing up on CMS for some reason. Medicaid shows she is still eligible. Called medicaid but they won't talk to me, only Myron because he is the one who signed her up!! Myron is at work! Calling ACHA and talked to Shelby. 871-7600 ext. 135. She straightened things out and said we need to sign some papers with Linda tomorrow in the clinic. Okay!!! That was all very ridiculous. Here is the crap part of it. Since Katia was still Medicaid eligible, if they had only typed in the medicaid number, which is the number they are supposed to use, then ANYTHING they wanted would have been covered. It was the MOST covered Katia has ever actually been with no stipulations at all!!! But they were using the Physicians Health Care number and it showed she had been cancelled. So we were sent home because of insurance problems not because Katia didn't need an MRI and was ready to go home.

September 13, 2002 Signed papers with Linda at clinic around 3PM. I feel better now that is all out of the way.

September 14, 2002 Good day around the apartment but bad evening. A lot of pain centered around a bowel movement. Called Dr. Rossbach, said to give her some Codeine and Tylenol.

September 15, 2002 Okay but having pain on and off through day. She is getting worse in the evening and had a very painful bowel movement.

September 17, 2002 Had a clinic appt. Counts were low so she got HGB and PLT transfusions. Home around 4PM. Seemed great in the evening. Good color, no fever, good appetite, no bowel movements.

September 18, 2002 Around 3:30 AM fever of 38.8, 4:15 AM 39.1. Called Dr. Ayala and Katia started throwing up. Arrived at ACH around 6:00 AM. Admitted to room 269. Katia's fever persisted all day. Slept a lot. Got roomate (Christina - 10 year old with AML) around 7:00 PM. No bowel movements. Today is Tatiana's 10th birthday:)

September 20, 2002 No fevers, a lot of pain until she gets mrophine. Every 3 hours but only painless for about 1 ½ hours. No bowel movements as of 1:00 PM. Had a bowel movement finally around 5:00PM. VERY HARD in consistency and a lot of pain with it. Getting Miralax up to 17mg 2 times a day.

September 21, 2002 Fever still persistent. Having A LOT of pain. Hasn't rested good. Has very runny bowel movements. Seems to be having a lot of cramping. Around 5PM I noticed blood in her mouth, quite a bit. Showed this to Amanda and we tried to find the source of the bleeding. Her breathing sound fine and since she was laying on her side she didn't seem to be swallowing the blood. We kept cleaning out her mouth with the little toothettes but it kept coming right back in minutes. A few other nurses came in and looked and Dr. Kerr was called. She said to order platelettes since katia's was so low. I wanted to know the source of the bleeding first. I asked Jean, the charge nurse, to call the resident doctor and one came up. They also called someone from the respitory team. Right before the platelettes arrived, Myron noticed the blood seemed to be coming from aorund one of her molars. It ended up she had cut a tooth. The resident doctor showed us and said the platelettes should stop the bleeding. It did. Long day!!!! The fevers continued through the night. She had a blood transfusion earllier in the day so her counts should be better. WBC 0.39, HGB 7.4, PLT 24, ANC 31. What I learned was that even though a child is fighting cancer, their normal things continue like cutting teeth. Had Katia not have been going through all of this, I would have known it was time for her to be cutting and tooth and it would have been no big deal but since her counts were low and we stay on top of things so much more than normal, I got worried because of all the bleeding and didn't even think, tooth!

September 22, 2002 WBC 0.25, HGB 11.4, PLT 145, ANC 0. I am concerned why her blood count is worsening. Since she had transfusions yesterday, her HGB and PLT counts are fine. Last chemo ended 12 days ago and she has been on GCSF for 10 days. Pain is bad. Dr. Kerr ordered the morphine be incereased. Katia has had a few bowel movements which were totally liquid so the miralax is d/c. Blood culture shows a broviac infection. Gram positive cocci? Moved to private room 265 around 5PM:) The mrophine increase seems to be helping Katia. Started Vancomycin around 5PM. That antibiotic usually works but has to fun for 14 days via IV.
Vancomycin day 1.

September 23, 2002 Had x-ray to see about her bowels. No diapers as of 11:30 AM. Appetite seems fine, less pain. Her hair is coming back (smile smile) enough to use SHAMPOO!
Vancomycin day 2.

September 24, 2002 Katia is having a LOT of pain. Still running fevers. Infection in line is unsure. Dr. Grana is ordering an MRI of her bottom for tomorrow to see how her bottom looks. Shows a lot of irration at the rectum but she is too sore to even sit up even a little bit. Also needs to see how much stool is in Katia at this time.
Vancomycin day 3.

September 25, 2002 A day of worry. Morphine is turned up and Katia pushes the button often but she is still in a lot of pain. She has an MRI at 1:30 PM. Woke up before going to recovery. Very irritable. Bottom looks horrible around rectum and Katia is very sore to the touch anywhere on her lower body. Dr. Grana says if the line infection doesn't clear up, the broviac will be removed. That would mean blood test, medicines, and GCSF would be done by poking Katia and putting IV lines her. Dr. Barbosa came in after 4PM and said she is packed with stool and has a very nasty infection in one of her buttocks which would explain why she can't sit up. She has a lot of inflammation in the buttock. This will get much worse as her WBC come up because her WBC will be trying to fight the infection. Used some betadine by the rectum before bedtime to see if that helps. IV team cleaned up the broviac sight and changed dressing around 9PM. Night went okay but she didn't seelp much. She is to sore to turn over and get comfortable. This is so far the most worried I have felt throughout this.
WBC 0.48, HGB 9.2, PLT 45, ANC 80
Vacomycin day 4.

September 26, 2002. I figure the vancomycin will end October 5th in the morning time. Day went the same. Katia was in a lot of pain. She is crying a lot and screaming a lot. The morphine really isn't helping with this pain. I don't really like room 265 because 2 other patients we have known died in here. She had one small bowel movement in early afternoon (95mL). Myron's visit perked her up a little but she mainly slept. Then around 7:15 PM she had a huge bowel movement all over the bed and diaper. Probably totalled around 900mL!, then a fe more after that. All totalling around 1600mL for the day. No fevers but not a good appetite. 1/3 of her breakfast and some pretzels and gummy bears.
WBC 0.79, HGB 7.9, PLT 41, ANC 95
Vancomycin day 5.

September 27, 2002 Woke up in poop! Both of us!! Bowel movements still coming along. Had 2 as of 9:30AM. (540mL and 82mL). Attitude seems somewhat better but appetite still weakened. Her hair is sprouting up nicely. WBC 1.35, HGB 11, PLT 34, ANC 229
Vancomycin day 6.

September 28, 2002 Much better mood. Appetite medium. Dr. Barbosa said we could do the miralax less now. Back down to 17mg 2times a dy. He also noticed a rectal tear. No bowel movements throughout night. Had a painful, runny one around 1:55PM today (82mL). She is smiling and playful for the most part.
WBC 1.95, HGB 9.3, PLT 33, ANC 527
Vancomycin day 7.

September 29, 2002 Counts are much better! Went walking today and to the playroom. Until now she wouldn't do anything through September 27th, then yesterday she got in a wheelchair for a little bit but TODAY SHE IS WALKING! We went to the playroom for almost an hour. She has been very nice to all the nurses today and we took 57 PICTURES!! Today was much better than the days since she was admitted back in the hospital.
WBC 3.55, HGB 11.4, PLT 37 ANC 1527
Vancomycin day 8

September 30, 2002 Morphine getting turned down some. Katia seems to be fine right now. She has a few more days of antibiotics but her pain seems to be gone and she looks good. Questions,
1. Will GCSF be discontinued now that her counts are up? No answer
2. Is her Broviac line good, how long will she keep it? Yes it is clear, not sure how long she will keep it.
3. What are good CBC numbers? What is a good ANC for her?
ANC over 1500 is good, WBC 6,000 - 12,000 (12,000 and up is too high), Platelettes 150-450. HGB 12 and up.
4. Should she stop getting sick so much now? Answer "?"

WBC 7.27, HGB 11.1, PLT 47, ANC 4943
Vancomycin day 9.

October 1, 2002 Katia had about 4-5 runny diapers in the night. Cut back on the miralx to ½ dose 2 times daily. We went out walking for about an hour. Her morphine has been turned down to .4 and will be turned down every few hours to wean her off today. She is looking and doing so much better. Dr. Barbosa siad the recta tear is healing good. Amanda is home sick :( Poor Amanda. Katia has had no bowel movements during day.
NOTE: Scruffy got attacked by another dog today so I had to run home and look at him. His eye is torn up and his leg seems broken.
WBC 5.00, HGB 11.2, PLT 61, ANC 2400
Vancomycin day 10.

October 2, 2002 Up miralx back to 17g 3 times a day. Katia has a poor appetite. As of 3 PM she has only eaten 1/3 of a grilled cheese sandwich and 2 pretzels. She ate that at 1:00 PM. She is off continuous mrophine but still has the button. Her Vancomycin has 3 more days to go then we hopefully go home. Hasn't had any bowel movements as of 3PM. WBC 4.82, HGB 11.8, PLT 78, ANC 2490.

October 3, 2002 Scheduled for bone marrow aspiration. Didn't know that. Woke up okay. No morphine hooked up at all right now. WBC 2.87, HGB 11.1, PLT 10.5, ANC 1080.

October 4, 2002 One more day of Vancomycin. Bowel movements still not regular. Bone Marrow looks good. WBC 2.25, HGB 11.4, PLT 122, ANC 710.

October 5, 2002 Going home!!!! Had problem in night with the broviac. Katia was having pain near her broviac site. She had a dye test done and chest x-rays. They show broviac to be fine:)

October 5 -10, 2002 All at home is okay, went to ER last night because her broviac broke. Bms not good either. Either they are totally liquid or constipated and ripping. Had a clinic visit today. Dr. Grana says she wants to schedule surgery to remove the broviac. Counts looked great. WBC 2.8, HGB 10.9, PLT 259, ANC 1400. She is not on GCSF at all anymore so those counts are on her very own:)

October 11, 2002 Met with Zack's mom. Zack passed away August 12, 2002. We were at the hospital during that time. Zack started with b-cell lymphoma which then changed to ALL. Never really reached remission. He had high toxins and acid counts which kept him very sick. Did FOUR induction rounds of chemo. His family misses him dearly but his mom is very happy to see that Katia is doing well.

October 16, 2002 Katia is shwoing some bruises on her legs. When she poops, she tears her rectum, the bleeding does stop but I am worried about her platelette count. Called clinic and spoke with Terri. She says Katia should be fine because the bleeding does stop.

November 4, 2002 CAME TO THE HOSPITAL AFTER GOING TO TOWN AND COUNTRY HOSPITAL EMERGENCY ROOM! HERE IS WHAT HAPPENED:
Around 7:30PM Katia was going to bed, she was tired. About 8:00 PM she felt warm. 100.7 temperature. I called the on call service. Within just a few moments it had gone up to 101.3. By the time Dr. Grana called me back just minutes later it was at 102.2. Katia started throwing up while I was talking to Dr. Grana and her lips were getting blue. She was gagging and throwing up. Dr. Grana said to bring her right in but if anything happened in the car, stop at the nearest Emergency Room. I hung up and called Myron and Katia's temperature was 103.0. I put Katia in the car and Myron pulled up and got in my car and we left. Katia was still throwing up until we got to the car. She was scared and not herself. I took her temperature and it was 104.3. That was at 8:45. We headed to St. Pete, me in the back seat with Katia and Myron driving. Katia felt like she was getting warmer as we drove. Just about 4 minutes after we pulled out, Katia stopped breathing and just became limp. She was looking at me, and I was moving her around and trying to get her to start breathing again. Myron spun around in the car and headed back to an ER right there. Katia started breathing but not good. We got to the ER about 9PM and rushed her in right back into the ER rooms. We started taking off her clothes and trying to get her to be coherent again, they took her temperature, 107.8!! We started patting her down with some wet towels. The ER people were really concerned but not much help. They called Dr. Grana. Someone came in and wanted to use a tylenol suppository but in the world of Leukemia that is a "no no". But Katia was getting so hot and she was not responding to us and kinda jumping around, not seizing but something close to that. They gave her the suppository which came right back out with poop so I put it in and it stayed. That was about 9:30. Then they wanted to hook her up to IV fluids. I was wanting to get out of there. They said an ambulance was on the way to take her to ACH in St. Pete but she needed fluids. They didn't know how to deal with Katia's broviac, they couldn't find diapers (she had pooped in hers) and they had no wetwipes! Finally some diapers were found and we were cleaning up the bed where she had pooped again. She was frantic cause she wanted a diaper on and fastened. Finally I got one on her but the tape would stick so I just held it shut with my hands and kept patting her down with cool cloths. Myron and I were trying to talk to her. Both of us were blood shot red from stress and nervous but we were remaining calm for Katia's sake. Finally they got the IV hooked up and soon after the doctor came and said that Dr. Grana would be waiting for us and said the tylenol suppository was okay (Well I hope so!) It seemed like hours but maybe about 20 - 30 minutes passed by from the time we arrived till the ambulance arrived. The ambulance drivers wanted to unhook the hospitals IVs and start their own but we just wanted to leave and get to St. Pete. Myron and I were getting very very impatient and we finally got out of there and on the way. Katia was shivering a lot and still had a temperature around 106.0. We wrapped her up some and got in the ambulance. Myron came in his car and we headed to St. Pete. A long bumpy and noisy rackety ride. It was the 2nd ambulance ride Katia had been in. The first was the day Katia was diagnosed and I couldn't help but think back to that and feel very overwhelmed!! I was afraid Katia was getting brain damage by the fever or losing her hearing because of the way she was acting, not hearing us and just talking and not making sense (more so than normal). When we arrived at ACH, Katia was yelling all the way through the hallways, "I need blood, I need blood!" She was just saying stuff and not making any since and talking about seeing ladybugs on the walls and in the elevator and everywhere. Then we got her straight to her room. This was around 10:30 or so. Her temperature was beginning to come down and after everyone came in and checked her out and started figuring out what antibiotics to start her on and the resident doctor came in and blood was drawn. By 11:30 PM her temperature was back down to 36.5 (celsius now). At 9:15AM it was around the same. No more Tylenol has been given. Idea is the Broviac may be infected. When I flushed it last night around 7PM, I must have pushed the infection into her body and that is why she was so suddenly sickened. Started on Vancomycin. Day 1

November 5, 2002 It seems she has a few bacterias growing. Blue line has a "gram negative coccibaicillius" (which is a very bad one) and the red line has a "gram positive cocci". Then the blue line also showed a "gram negative rod."??? Anyway her broviac was removed today. The hole should heal up in about 5 days. No word yet on our length of stay. No fevers and no CBC run today. Also no bowel movements. I have learned about these bacterias and I know some of them are very bad and I don't understand how she could have caught them. Some things come around in the hospital but one of these almost seems like contaminated medicines that I use to flush her broviac. No real answers are being given to me. Vancomycin Day 2.

November 6, 2002 No fevers. Seems fine. I can't believe what she was like 2 days ago. This is amazing. Changed the dressing on her surgery site and the area looks good. Not much information given today. Vancomycin Day 3.

November 7, 2002 Katia doing fine. No bowel movements though and she keeps getting headaches on and off but they go away. Had to replace her IV and have blood test. Not happy about that. She misses her broviac now! So do I. I don't like seeing her get poked. Also, we moved to a shared room. That upset me because it is hard to get Katia to be quiet for other people plus when I have to use the bathroom I have to go way down the hall and Katia screams when I leave the room. I always worry about people being in and out of our room anyway and Katia getting germs. Back on Miralax 8 mg. 3 times a day. Vancomycin day 4.

November 8, 2002 Woke up okay. Still getting little red dots that appear maybe on eor two at a time and then go away. Didn't sleep well because the lights kept going on by bed A and noise woke her up. We are located by the bathroom so everytime the person from bed A had to use the bathroom, the light came on and Katia woke up. She is quite grumpy and still hasn't had a bowel movement. Miralax up to 17g, 2 times a day. Vancomycin day 5.

Lab results from broviac growths:

Red lumen - Gram positive cocci in clumps
Staphylococcus species coag. Neg.
Blue lumen - Gram negative rod
Stenotrophomonas maltophilia
Blue lumen - Gram negative rod coccobacilli
Klebsiella Oxytoca

On three antibiotics. Vancomycin, Tobra, Fortaz

November 9, 2002 Katia's perephial lab came back "gram positive cocci clusters" so labs were redrawn (Katia was repoked) around 3PM to check to see if this was right. Did suppository around 2PM, had BM in Dawn's hand right after the suppository:) and then had about 6 more duing the day. No miralax given at bedtime. Long day, not much of a nap. Room dirty and trash overfilled. Finally cleaned when Diane came in around 8PM. When I have my own room I do everything myself and keep things very clean and in order!

November 10, 2002 Labs drawn around 8AM to check counts before vancomycin dose. Another lab to be drawn before Tobra dose. I went home from 11:30 AM to 6:00 PM. No bowel movements while I was gone. The IV in her hand "infotrated" so it had to be replaced around 8PM. It was really bad. Myron and the kids had just left and Katia started screaming!!! Her hand all the sudden started swelling up.
WBC 7.85, HGB 13.3, PLT 370, ANC 3070

November 11, 2002 Vancomycin and Fortaz d/c. She will still be on Tobra and a new antibiotic Answer. We should be able to go home on Friday. Have gotten to know our roommates, Yasmin. Night O.K. No bowel movements still. Got all new antibiotic pumps on the floor today. Blood tests on perephial still negative so that is good.

November 12, 2002 Blood lab test still negative on perephial labs. Dr. Grana believes it was a contminent. No Bms as of 1:30 PM. Sent Jacob (another little patient who has been in the hospital since July!) A card and gave him a pullstring ladybug from Katia. Also we gave Yasmin a card today. I have learned how much Katia likes cards (to date she has over 1600!) So I want to pass on the happiness to others.

November 13, 2002 Today is Sharayah's 14th birthday:) Good day with a lot of walking! IV infitrated again at night. Replaced it easily and had 2 Bms.

November 14, 2002 Had 3 Bms in morning. IV site looks fine. Walking but her butt seems very sore? Small rash on right arm. Supposed to go home tomorrow. We have been making a lot of rounds meeting people and talking to people. Katia is being VERY friendly with everyone!! Why? Because we don't plan on any more hospital stays. We are in very good moods. No more broviac, go home and take normal baths, wear normal clothes, get her hair back :) :) :) All smiles!!!!
Had about 6 total Bms by end of day. Katia is very hyper this evening. Doesn't want to go to her room at ALL! Has fungal rash on right arm so Dr. Grana ordered some antifungal cream to rub on.
WBC 4.91, HGB 13.1, PLT 362, ANC 1170

November 17, 2002 AT HOME AND DOING WELL! Somewhat bruised, don't know why. Katia is very much enjoying taking regular baths!!! Has her rubber ducky, SHAMPOO!! We can fill up the tub passed her belly and sit and soak. She also got to take a shower with me! I have missed that cause she couldn't get wet on her chest.

November 19, 2002 Katia seems to be getting a cold, very stuffy headed. Still bruised up on her shins. Took pictures to show Dr. Barbosa.

November 21, 2002 Clinic visit. Wanted to have Bone Marrow Biopsy and spinal. Maybe next visit. They were done in October but since Katia got so sick and is so bruised, we are worried. Counts look good though and are going up slowly.
WBC 4.91, HGB 13.1, PLT 362, ANC 1700

November 27, 2002 Thanksgiving tomorrow. We are so happy to be home. Our friend Christina (10 year old with AML) has been very sick and is in the hospital still. We pray she gets better. Katia is still VERY bruised on her shins and she says her legs are sore there. She also has bruises some on her thighs. She is still not active like a typical 2 year old. Dr. B plans to do a BM biopsy and spinal next visit in December. We are definitely looking forward to Thanksgiving. So much to be thankful for!! Her appetite is great and she is sleeping well. Why so bruised?

December 5, 2002 Went to clinic and saw Dr. Kerr. I had put hemla cream on Katia for the biopsy and spinal. When I arrived they said it was cancelled for another month. Dr. Grana had cancelled it since it was done in October. She said another month to space them 3 months apart but Dr. Barbosa had said he wanted one done and in October Dr. Grana said the next one would be in 2 months? Plus we have been very worried because so many kids have been relapsing. After persistance and some phone calls she had the spinal done. No bone marrow biopsy. Won't know results for 2 days. Usually Dr. Barbosa at least looks under the microscope and gives preliminary readings. Will call Dr. Barbosa to discuss my concern.
WBC 6.7, HGB 14.0, PLT 202, ANC 2600

December 7, 2002 After much aggravation and phone calls to the clinic, the results finally came in. ALL CLEAR!! That is great!! I do wish I had bone marrow results but I will talk to Dr. Barbosa about that. Katia is just staying so so so bruised up on her shins. BIG bruises that feel rough and she is sore? She has a cold right now but no fever.

December 18, 2002 Went to clinic for the Bone Marrow Biopsy. Dr. Kerr did it but Dr. Barbosa looked at it also. Dr. Kerr looked at the microscope and said it looked good but would send it to lab. I am happy the prelimaries are clear and Christmas is right around the corner!!!! This is a dream come true for our family. Just a little over a month ago, we almost lost Katia on the way to the ER but today she is feeling good, still bruised, but beginning to run around more, eating great, sleeping through the night, taking normal baths and has good counts. Yeah! The plan is every 3 months, spinal and biopsy. Next one is scheduled for early March. Cytogenic tests will also be run from this biopsy. Results in a week or so.
WBC 8.8, HGB 14.4, PLT 213, ANC 5300

January 6, 2003 IT IS A NEW YEAR! Katia spent most of last night coughing and wheezing and not getting any sleep. We decided to take her to clinic first thing in the morning. I also wanted to discuss the continuous bruises with Dr. Barbosa. First we did a CBC and her numbers have gone down except for her HGB from last month.
WBC 4.5, HGB 14.6, PLT 148, ANC 1800

Then we did a CT Scan to look at her sinuses. That showed a pretty severe sinusitus. Three weeks of Augmentin 2 times daily.

Dr. Barbosa put the pictures of the bruises Katia has been having in her file and said to bring her back when they darken again. He asked if she had joint pain. I don't think so but there is some test he wants to maybe do. All in all the sinusitus explains the cold symptoms but unexplained is all the bruising on her legs and why did her counts come down? Also, the petichia he says is because of the sinusitus.

January 14, 2003 Katia to clinic for the bruising, CBC and blood tests.
WBC 7.8, HGB 15.6, PLT 197 ANC 2000

Find out results from blood test (looking at her clotting agents) tomorro

January 15, 2003 Blood tests show no reasons for bruising?

Also today Rob passed away (our 19 year old friend with AML) Viewing January 17 and funeral January 18th. We will miss Rob. He had been through so much lately fighting against this horrible disease.

January 17, 2003 Went to Rob's viewing. There were 100s of people there. His parents looked upset but the viewing was nice. A lot of Rob's things were set up, pictures, trophies, hats, etc. His sister was there and she had donated her marrow 3 times to Rob.

February 6, 2003 Went to clinic. The bruising is a lot less now:)
WBC 6.2, HGB 12.9, PLT 247, ANC 2000

March 7, 2003 Katia had been having some abdominal pain in February so I took her in. They examined her and felt like it could just be cramping. No CBC done or anything. Yesterday was a clinic visit. Bone Marrow and Spinal were done after an hour wait. I asked about doing the CBC while we waited for the bone marrow and spinal cause I always like to get those results right after we get in the clinic. But they weren't done till after the bone marrow and spinal and Dr. Barbosa and Dr. Grana had already left. Therefore I couldn't discuss the results with them. Her WBC count was higher than ever since she has reached remission. Katia seems to be doing good. She eats a lot and has very good energy. She sleeps normal, not too much, not too little. The nurses said the WBC could jump up because of sickness but she hasn't been sick. Even when she had horrible bacteria infections in November the WBC only got up to 8.38. I understand that for so long with chemo her body has been immunsuppressed so her counts weren't that of a "normal child" but now that she is off chemo her counts can go higher and her WBC can rise if she is sick but she doesn't seem at all sick. Today I felt like clinic just moved us along and I didn't get that question answered. I wish the CBC had been done in the beginning so I could have asked Dr. Barbosa.
WBC 12.3, HGB 13.3, PLT 235, ANC 6900

March 24, 2003 Well Katia is doing really well! All her tests came back clear and I am so happy with that. Her energy and appetite levels have stayed the good. She has had some rashes that come and go on her face and around her eyes and some small bruising on the back of her thighs and her shin fronts. She acts fine though. We have moved to the new house a couple of months ago so she has a lot more room to roam around and a porch to play on that is carpeted and has toys out there for her. She likes to go out there. Her bowels are still causing her a lot of pain though. It is a big deal for her to finally go. I was trying potty training but since she is in so much pain, she just screams while she sits there. She did pee in the potty once or twice and was very happy! What we have become to think of as normal with her screaming - or at least we don't get so alarmed - we had company in and they don't think the screaming is so normal and that she should be getting better by now. She has been off chemo for 6 months now. So I am going to take her in and pursue this pain. She is complaining also about her legs hurting. She just drops and screams holding them in the lower calf areas and she is saying her right eye is hurting where the tumor is. This is a lot to bring up at clinic but I am going to. I don't want Katia going through any pain that can be prevented and I want to know her body is getting back to "normal".

April 1, 2003 Had clinic visit and discussed the problems Katia has been having. Katia had her CBC done, leg x-rays of her right leg and a bone marrow biopsy. The biopsy preliminaries looked good and the leg x-rays looked good. Dr. Barbosa was concerned about the bone pain. He also wants her to have an ultrasound done. He sent us over to the hospital to have them all done but the ultrasound would have to wait until Thursday April 3, 2003. Today counts: WBC 7.2, HGB 13.0, PLT. 213, ANC 3200.

April 3, 2003 Went to the hospital to have the ultrasound done. The tests went very well and Katia laid still for about 30 minutes while they looked at her abdomen, pelvis, kidneys, spleen and her heart. It was so neat to see her heart on the ultrasound because the last time I saw that was when I was pregnant with her. Katia was so well behaved and she just watched the ultrasound screen and some cartoons playing on the TV. Dr. Barbosa went and looked at them and said everything looked good. We had been at the hospital for a few hours now but Dr. Barbosa suggested we go see the Gastrologist, Dr. McMelan since Katia was having so much pain with her bowels so we drove over there to see him. We discussed Katia for a while and he looked at her tummy. I told him we had been using mineral oil on and off and suppositories to get her to go to the bathroom. He found some "skin tags, fishies" on her rectum and said those were left over from the sores she had but they really shouldn't be causing her pain. Maybe she just feared pushing so to continue to use the mineral oil twice a day and see if that helped take away the pain. He wants her to have 1 or 2 loose stool movements each day without pain for a few months. Don't try to potty train her until all of this is cleared up. He will call in two weeks to see how she is doing.

April 16, 2003 Dr. McMelan's nurse called and asked how Katia is doing. She has been doing great while using the mineral oil. She shows a little fear to go sometimes but no pain. The stools were orange for while but then they lost that color. The nurse said that could be because of the mineral oil.

April 17, 2003 Katia had 3 very lose stools so I am going to lessen the mineral oil to once a day and leave her on that dose over the next 2 months.

April 20, 2003 EASTER! I am so happy with each holiday now because we are home and Katia is doing well. A few of her online friends aren't doing so well though. A little boy Tyler who is 6 is not going to make it. His family has spent the Easter holiday spending time with their son. I wish a cure could be found for this. Too many children lose their battles to this and it is heartbreaking knowing what they must be going through. I couldn't imagine life without dear little Katia.

April 23, 2003 Katia was very sleepy last night. Went to sleep around 7PM and didn't get up today until around 9AM. She ate a good breakfast and is just wanting to watch TV. She looks good, though. She keeps saying she is very very tired but she doesn't go to sleep. She is just saying she is tired.

April 25, 2003 For the last couple days Katia hadn't had a bowel movement, not since the day before Easter. She finally had one last night. She was feeling warm to the touch but did not have a fever when her temperature was taken. Since the bowel movement she doesn't feel warm to the touch and she is running around quite hyper!

May 15, 2003 Katia had her clinic appt. this morning. We were actually 15 days late for this appointment but her counts looked good. WBC 5.9, HGB 13.6, PLT. 253, ANC 2000. These numbers look good. I look back at others and her numbers are always bouncing around. Especially the WBC and ANC. Of course the two go hand in hand. She will have her Bone Marrow Aspiration and Lumbar Punctures done in June at her next visit. We pray, as always, that everything comes back 0% Blast.

May 18, 2003 Well today Katia's thumb is looking pretty bad. It hasn't looked that way since her counts have come back up after chemo was dropping them. Usually this has meant her WBC has been low but now they SHOULD be okay. I am concerned.

May 28, 2003 Katia just has me a little bit nervous. She is so bruised up right now and seems somewhat more tired than normal. Her thumb is looking better. Her next Bone Marrow Aspiration is in just a couple of weeks so hopefully all is well with that. Katia is always so happy and energetic with a great appetite so it is hard to really say she isn't feeling well. She is not usually one to take naps but for the last few days she has. Hopefully I am worried for no reason:)

June 5, 2003 Well everything looks good. Katia had her Bone Marrow Aspiration and Spinal and CBC. WBC=6.1, HGB=14.5, PLT=238 and ANC= 2200. The preliminaries all look good too on her aspiration.

UPDATE: June 19, 2003 All of Katia's tests came back good. She is in the clear. Next one is scheduled for September now. Since I last updated, we lost 4 dear people due to Cancer. Jalen, Anthony, Akaida and Colby. This disease has to be beaten.

June 29, 2003 Well Katia has been feeling a little more tired and cranky these last few days. We are keeping an eye on her but not jumping to anything. She could just be worn out from busy days. She always has an outgoing attitude so it is really hard to see things by looking at her.

July 14, 2003 Katia went to the doctor and all her counts look great.
WBC 6.5 LYM 4.0 MID 0.3 GRAN 2.3 RBC 4.33 HGB 12.7 HCT 37.1 MCV 85.6 MCH 29.3 MCHC 34.2 RDW 13.3 PLT 237
She is doing very well and for that we are so very very grateful. On July 13, 2003 another beautiful child lost her battle to cancer, Taylor Johnson. She had Osteosarcoma. She will be truly missed.

August 6, 2003 All things look perfect. We saw Dr. Grana. Said it could be from crying or something like that. But, if it doesn't clear up or gets worse, they will do an MRI of her orbits just to check. Her counts are as follows. WBC 6.8 LYM 4.3 MID 0.4 GRAN 2.1 RBC 4.37 HGB 12.9 HCT 37.4 MCV 85.6 MCH 29.5 MCHC 34.5 RDW 12.6 PLT 237
Since the last appointment, we have lost more friends. Chassidy and Luke Ervin. Chassidy had AML and Luke had a brain tumor. Also our friend Christina has relapsed. She was going through treatment at the same time as Katia, also for AML. I hate this disease!

August 20, 2003 Katia has not had a bowel movement since August 15, that is 5 days ago. She is now having headaches and her feet are hurting. She is complaining about the back of her legs hurting her also. She is staying in bed all day today and doesn't want to do anything BUT her eating and drinking are fine. I have been giving her mineral oil and have also started Miralax back.



August 23, 2003 Still no sign of bowel movements. She is now totally staying in bed and she is running mild fevers (not over 38.0) and then she sweats and they go away. I have also added citrate magnesia 3 times a day and suppositories in the morning and at night. I called clinic and they said if she hasn't gone by Monday, August 25th then bring her in.

August 24, 2003 No bowel movements, headaches are more often, fevers on and off but still no higher than 38.0. I called the Dr. on call and she said to take her into clinic tomorrow. There are too many things going on at one time so she needs to be checked.

August 25, 2003 Went to clinic. Katia had a fever while we waited and it broke while we were still waiting. She just laid on my lap in the waiting room instead of walking around or playing. By the time we were called back, her temp was 36.0 which 37.0 is normal. We saw the doctor and described all of her problems. Katia was just laying on the bed but being talkative. They want her to come back in the morning at 8:00 AM for a bone marrow aspiration and a spinal check. They aren't sure what is causing her to have all of this. She had a CBC done and although somethings have dropped, everything is still in normal range. WBC 4.9 LYM 3.0 MID 0.3 GRAN 1.6 RBC 4.24 HGB 12.6 HCT 36.7 MCV 86.5 MCH 29.7 MCHC 34.3 RDW 13.9 PLT 231 The main thing that concerns me is the GRAN being 1.6. That is the lowest it has been since her last chemo treatment. That is her immune system. Her WBC (white blood cells) have gone from 6.8 to 4.9. I am not doctor so therefore I really can't even guess anything but I just don't think this is a good sign.


August 26, 2003 Katia has relapsed in her spinal fluid, 85% Leukemia Cells. She goes in the hospital first thing tomorrow to have her broviac put back in, start chemo and prepare for a bone marrow transplant. We are horrified right now and scared.

August 27, 2003 Katia is in the hospital, has her broviac back. Lab tests show her spinal fluid is 93% Leukemia Cells. Her blood has 8% and her bone marrow results aren't back yet. She is due to have an MRI of her brain tomorrow to check for tumor growth and her previous tumor to make sure it is not enlarged. She will start chemo tomorrow after the MRI. She is in a lot of pain tonight with her bottom and very very upset to be back in the hospital. She doesn't want to feel sick and lose her hair. She wants to go home. CBC Results: WBC 4.08, HGB 13.3, PLT 209, ANC 1082

August 28, 2003 CBC Results: WBC 3.71 HGB 11.7 PLT 263 ANC 2189

August 29, 2003 We have gotten a few tests results back. She has a small lesion in the top part of her brain. We are not yet sure of the significance of this and probably won't know for a few weeks to see if it responds to chemo. A lesion is kind of the opposite of a tumor, instead of a ball it is more of a tear. She started her spinal chemo today(ARA-C). She is also taking Decadron, a steriod, by mouth two times a day for about 3 days or so. Today she will start her IV chemo also. She had another echocardiogram done to make sure her heart is okay for some of the chemos and it looked okay. Some of the chemo drugs she will be on right now will be Fludarabine, Idarubicin, ARA-C (Cytarabine). After she had the chemo to her spine (she had a small amount of sedation for that) she started shaking alot and saying she was very cold. Then she would talk normal and then act weird. She seems fine now about 30 minutes later? The chemos she is receiving today is the ARA-C spinal chemo, and through IV Idarubicin (IDA) and Fludarabine. She is also taking a steroid by mouth, Decadron. She seems very irritable right now but she has gone to sleep. CBC Results WBC 3.79 HGB 11.3 PLT 254 ANC 710

August 30, 2003 On Idarubicin and Fludarabine. She is also having a few mouth sores so she is doing two rinses 3 times a day. Leukemic Rinse and Peridex. She is very moody, one minute happy, the next very sad and quiet. Feeling sick and not wanting to eat much. Hair shedding a little bit but not much. CBC Results: WBC 2.18 HGB 11.5 PLT 259 ANC 1070

August 31, 2003 Started ARA-C chemo and stopped the Fludarabine. Hair shedding a little, not much. She is sad a lot today. Went for a walk out to the bridge and saw the cars pass under. Did some crafts together. CBC Results: WBC 1.00 HGB 11.8 PLT 289 ANC 610

September 1, 2003 Throwing up and not eating. Today is the last day for ARA-C CBC Results: WBC 1.53 HGB 11.2 PLT 283 ANC 1468

September 2, 2003 Very gaggy and not eating at all. We have learned that our friend Brittany (DX Osteosarcoma) has passed away. CBC Results: WBC 1.73 HGB 10.5 PLT 231 ANC 1695

September 3, 2003 Well the doctor thinks that Katia's eye (the tumor) caused her to relapse. It is just unusual for an AML to relapse in the CNS and so rapidly. They want to do radiation to the eye. CBC Results: WBC 1.08 HGB 10.1 PLT 176 ANC 1026

September 4, 2003 Today was not too good. We had gone for a walk and Katia was happy and then she just stopped walking and froze. She would look at us and just stare like she couldn't breathe. She started getting red patches around on her face. We took her to her room and hooked her up to check her oxygen level which was fine. They called to get an echocardiogram to make sure everything with her heart and broviac placement was still looking okay which it did. Then she had another episode like that again with the nurse in the room? We are puzzled. CBC Results: WBC 0.16 HGB 9.5 PLT 136 ANC 133

September 5, 2003 Her hair is shedding some but not much. It seems to be feeling very coarse. She is being very grumpy and extremely itchy. We are trying to get cortozone ordered for the itch since the benedryl and Narcan aren't doing a lot. It doesn't seem to be the Morphine causing the itch so we are not sure. Maybe the ARA-C is causing it. She was supposed to have her spinal chemo today but with everything going on, it has been delayed. I don't like to delay it but we have to. We also think we may have a Marrow match. There will be further testing done. It is an adult male. It looks good though. CBC Results: WBC 0.04 HGB 8.9 PLT 107 ANC 0

September 6, 2003 The new MRI results are showing there is now something on both optic nerves and tear ducts. They are not sure whether it needs to be biopsied but there will be radiation done to the eyes. Not sure when. The idea of transplant would be to get the Donor's marrow, send it to Moffit Cancer Center, have the T-cells drawn out and then do the transplant. This would be the best way to do the transplant and the doctor seems very positive with these results and plan of action. The adult match is not being followed anymore. They are looking a cord match right now. CBC Results: WBC 0.02 HGB 8.1 PLT 61 ANC 0

September 7, 2003 Katia is on a whole list of meds right now. Benedryl, Cortozone, GCSF, TPN and Lipids, Cafepine, Vancomycin, Morphine and Narcan, and Diflucan. Basically there is always something. Her blood and platelets are low so she will get both transfusions today. She is complaining still about her broviac hurting, the insertion site hurting, her eye hurting and today she woke up saying the lights were hurting her eyes. There were no lights on in the room? Today she had her spinal chemo and from the fluid they took out and tested, it seems she is already in remission in her spinal fluid. That is great and very surprising. It was 93% just 12 days ago and now it is 0% Leukemia Cells which means she is responding to the chemo well:) CBC Results: WBC 0.03 HGB 7.3 PLT 36 ANC 0

September 8, 2003 CBC Results: WBC 0.03 HGB 12.7 PLT 112 ANC 0

September 9, 2003 CBC RESULTS: WBC 0.03 HGB 13 PLT 67 ANC 0

September 10, 2003 Katia's broviac was still hurting her so the IV team came in and changed the dressing. Her skin was very irritated and the site was bloody so hopefully this dressing change will make a difference. The meds continue to be Diflucan, GCSF, TPN, Lipids, Fentenyl, Benedryl as needed, Cortozone as needed, and the mouthwashes by mouth. She is also on Flagyl (antibiotic) by mouth to help clear up the C-Dif. CBC RESULTS: WBC 0.04 HGB 12.7 PLT 67 ANC 0

September 11, 2003 Hair starting to thin. This morning Katia woke up with a 38.4 (101.2) fever so they drew some blood cultures. The fever is coming down on its own and 2 hours later it was down to 37.1, more close to her normal. Her normal is usually low at 35.7 - 36.3. If she spikes again, then we will add back in the antibiotic Cefepine. CBC RESULTS: WBC 0.14 HGB 12.6 PLT 46 ANC 0

September 12, 2003 Hair is very thin and dropping out. Katia spiked a fever of 39.2 Put back on Vancomycin, labs drawn CBC Results WBC 0.14 HGB 12.2 PLT 27 ANC 0

September 13, 2003 Katia is pulling out most of her hair. Fevers have broken. Katia is still not eating. Just bites here and there.She remains on the TPN and Lipids and antibiotics. Plans are to start round 2 of chemo on September 15th. CBC Results WBC 0.13 HGB 11.8 PLT 14 ANC 0 Katia will have a platelet transfusion today

September 14, 2003 Hair is gone. :( We are hoping that a week after this next round of chemo is done to have a few days break at the Ronald McDonald House and try to do the eye and brain radiation each day on an outpatient basis. Our fear is fevers will bring us right back in for admit though but even a day away would be nice for now:) CBC Results WBC 0.14 HGB 10.9 PLT 54 ANC 0

September 15, 2003 Had IT chemo to the spinal and plan to start IV chemo later in the evening. Katia has been very weak when she stands up. We are in isolation and have been for quite some time now since September 8th. Katia has gotten up and walked around her room a few times but tires very quickly. Her counts have not recovered from the last chemo but we start round 2 today to stay on schedule. Katia had a platelet transfusion before the spinal since her counts had dropped too low to do the spinal. CBC Results WBC 0.17 HGB 10.5 PLT 31 ANC 0

September 16, 2003 Chemo started right on time. No fevers today:) Still not eating. Remains on TPN and Lipids. Stopped antibiotics. CBC Results WBC 0.09 HGB 10.0 PLT 119 ANC 0

September 17, 2003 Fever came back in the evening at 38.6. Started back on antibiotics but not the vancomycin. They have her on Cefepine and Tobramycin. Let's see if that works. Tylenol brings down the fever but it keeps coming right back. Waiting for a bowel movement to check about the C-Dif. She has been on Flagyl by mouth for a while so the C-Dif should be going away? Had x-ray of her belly due to some pain and swelling. No results yet. CBC Results WBC 0.06 HGB 9.8 PLT 67 ANC 0

September 18, 2003 Had ultrasound of her belly. No word yet on results. Fever still coming and going but mainly staying around 38.3 - 38.5. Started the ARA-C last night so we are watching for rashes. They are giving her hydrocortozone ahead of time now to try to prevent the itching and she is using a different eyedrops to see if they don't irritate her eyes as much. It is a steroid drop to protect her eyes from the chemo but a different kind of drops. CBC Results WBC 0.07 HGB 9.8 PLT 67 ANC 0

September 19, 2003 No fevers. Katia is just worn down today and sleepy. Started ARA-C last night and we are hoping she does not break out in rashes. They are giving her cortozone IV before they start the ARA-C doses. It will be 24 hour doses. CBC RESULTS: HGB: 9.2 PLT: 41 WBC: 0.05 ANC: 0

September 20, 2003 Fevers 39.2 Katia is so out of energy. She is receiving blood and platelet transfusions today. No new news on transplant ideas or results. I never found out about her spinal results the other day I am hoping her spinal fluid remained in remission. Katia's thumb looks horrible and is very sore to her. Dr. Barbosa said to keep it unwrapped. Katia's fevers only stay away for about an hour after Tylenol and then they come right back. She had 5 runny diapers today and they are very smelly. Another sample was sent early this morning to test for C-Difficile which I think will come back positive. She is taking Flagyl by mouth currently for this. She is now on 3 antibiotics, was on 2. She is on vancomycin which was added back in to hopefully help with her thumb and fevers. She was already on Cefepine since the 17th and now they have added a new one to her, Timentin. CBC RESULTS: HGB: 8.4 PLT: 15 WBC: 0.03 ANC: 0 (16 days at 0 now)

September 21, 2003 Katia is still maintaining fevers. They just won't go away. They are around 103.0 We went and had a CT Scan done which took two tries because Katia needed to be sedated. During the CT Scan (it was of her abdomen) they saw something questionable in her lung so we waited and waited through the night to go x-ray which they kept trying to have done but no x-ray happened.

September 22, 2003 First thing this morning we had the chest x-ray done which went better than I expected. This x-ray isn't showing anything but they aren't satisfied with the film so it will be repeated. Her lungs aren't sounding right when they listen to the lower part of the lungs. Katia has been having a lot of very very runny diapers and pain right before she goes. She is very puffy due to water retention so they are going to use Lasix to try to drain off some of the fluid in her body. Her left eye (not the one with the tumor) is almost swollen shut and she is so puffy looking. Her diapers hardly close on her. Infectious Disease came in to look at her thumb and rash and they took a sample of some liquid from a blister on her thumb to have it tested to try to see if it is fungus or bacterial. The Lasix really didn't drain much of her fluid. I think it needs to be repeated.Katia is also still positive for C-Difficile Toxin B so we are still on isolation.

September 23, 2003

Katia's thumb looks much worse. The fevers have been staying away:) The chest x-ray however was repeated and the results are the same so the doctor wants to do a CT Scan in the morning. We did a biopsy on her thumb today which wasn't as easy as I thought. We gave her some sedation and did the biopsy in her room. Well, she started screaming when she got the piece of skin removed, her platelets were low (around 24) so she bled and bled and then her oxygen level kept dropping and dropping until it got around 70% and she started receiving oxygen. That scared me. It took a while of her having to keep the oxygen nearby because as soon as she would stop using it the numbers would start falling within a few minutes. Then it started picking back up and staying up. We should have results in the next 2 days or so. Also today we lost a dear friend. Codi Frazier. She passed away following a long and courageous battle with osteosarcoma.

September 24, 2003 Her WBC count is finally 0.01. It was 0.00 for the last two days. Her ANC has been 0 since the 5th of September (19 days) Today is day 29 in the hospital... The runny diapers are slowing up and her oxygen levels are now staying above 95%. They used to always stay at 100%. The explination is that her lungs are inactive and not working as hard as they should probably because of her inactivity. She had a CT Scan done which shows a little bit of inactivity (I forget the word there) but there is no pneumonia and that is very good. About the transplant, there is a cord blood that the doctors feel comfortable with but they want a plan B in case that doesn't work. The only plan B they can think of is called a Haplo Transplant. That would have to be done outside of Florida probably in Tennessee or New York. They are going to try to find out if they can do the radiations and the Cord Transplant here and then IF she doesn't graft, will the other hospitals then participate and do the Haplo Transplant or would they want her right now to do all the pre-transplant workups and do their Transplant first without trying the Cord. Sometimes, if someone has a procedure done, it messes up their chances to try something on trial. So we will see. I want it to work that we do the Cord Transplant here.

October 19, 2003 It has been a while since I updated here but Katia's counts are just now finally coming up from zero over the last couple of months. Her WBC is finally 0.24 today and her ANC is now 120!!! Katia has been battling pneumonia along with other unexplained problems. She has also done 4 out of 6 radiation treatments to her right eye which seems to be going well. We still don't know much about a match but it does look like whatever we do will be done here at ACH so that is good to know. Katia has a constant cough and ongoing throwing up all throughout the day and night. She hasn't eaten since September 5th. I worry that all of this is going on and we haven't even begun to prepare for or go through transplant which is a LOT harder on the body than what we have done thus far.

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