Monday, March 28, 2005

Happy Birthday Hannah

3/28/05 - Happy 3rd Birthday Hannah!! Well Hannah has had a very busy week. Early last week she had a CT scan to determine why she was developing a fever. She then had a bone marrow test to try to determine why her blood level counts have not been rising on their own. The first test brought about more questions and a second bone marrow test was done the next day. The doctors were trying to determine if the J.M.M.L. had somehow mutated into another form of leukemia (A.M.L.), which has not yet been ruled out, but would be much harder to treat. The preliminary results of the cultures showed that 30% of Hannah's bone marrow was defective. 15% of that were J.M.M.L. cells and the other 15% was still unsure and needed further growing. A few days later half of those cells were determined to be J.M.M.L. The last portion of the culture was still growing for further examination. No results yet. Hannah's spleen had also enlarged further. The good news is that since early last week Hannah has not had a fever and has not required any blood transfusions for almost a week. During all this Hannah's blood counts have been slowly rising on their own and are starting to stabilize. Her platelets in the 70's, her hemoglobin in the 90's and her white blood cells >1.5 . Hannah will be starting her next round of chemo within a day or two. It has been 2 weeks now and Hannah remains in isolation and is still not alllowed ANY visitors. BUT today being Hannah's 3rd birthday the hospital made an exception for 2 hours ONLY and allowed Grandma, Grandpa, Uncle Ken and Aunty Mel to throw her a little party in her room (Dora being the theme of course). A few of Hannah's nurses and care team were able to join in. Hannah took a bit to absorb all the attention but by the end of the party was full of life and laughter. It was great to see her smile. It lit up the room. Hannah really needed the interaction with family and thrived on the positive energy. Although she has lost weight in the past few weeks Hannah enjoyed her homecooked birthday lunch. Near the end of the party Hannah was up walking around on her own with her IV pole, kicking and throwing the ball with excitement. It was a great time for all.

Wednesday, March 23, 2005

3/23/05 - We got some very upsetting news this morning. Emily (Hannah's 8 months old sister) had been tested as a possible bone marrow doner for Hannah a few weeks ago and the test has come back negative. She had a 25% chance of being a match. As disapointing as this is Hannah is now registered on the National Bone Marrow Donor Registry. Thank you to everyone for your prayers. Let's continue to pray that a match is found very soon.

Monday, March 21, 2005

3/21/05 - Still no news about Emily's test results. The waiting is terrible. We are still praying for a miracle. Hannah just got back from a CT scan this evening. She has been having a fever the past few days. The doctors think there might be a fungal infection in her sinus, ears or chest. She is scheduled to have her bone marrow test tomorrow to try and determine why her blood counts have not been rising. Tommorow is day 21 since the first round of chemo and she should be starting the second round, but that will not take place until they have some more answers. She is also having a GFI (kidney function test) to determine if her kidneys are functioning normally. This is a standard test done before and after chemo treatment. Hannah remains in good spirits, she was up walking around her room. She is eating and drinking well. She did start on a new antibiotic on Friday night that gave her some adverse reactions. She had the shakes and a fever. Those symptoms have slowly disappeared. She has been afebrile (fever free) since 8am yesterday morning. YEAH! Karen (mommy) had her first night at home with Emily (8 months) in 6 LONG WEEKS! Grandma was able to spend the night with Hannah to give Karen a MUCH NEEDED break. Hannah and grandma had a great time playing playdough and painting pictures. Hannah's hair has slowly been thining out but not very noticeably yet, so Grandma has been buying her different hats which she has enjoyed trying on. Hannah remains in isolation unable to have visitors (other than mommy & daddy & grandma when relieving mommy). We're hoping that will be lifted very soon. Hannah needs to see us as much as we need to see her. Emily is especially missing her big sister .

Friday, March 18, 2005

3/18/05 - Hannah remains in isolation due to this VRE. There have been a couple other cases in the hospital therefore Hannah is not allowed ANY visitors. Hannah had an ultrasound today. The doctors are trying to determine why her blood counts have not yet started to rise as they should. It is a possibility that they are collecting in her spleen. She continues to have platelet transfusions every 24 hours and whole blood every 3 days. The doctors have decided that if her levels do not start to rise by Tuesday they will do a test on her bone marrow and then decide if they need to remove her spleen. It looks like Hannah will be in isolation for the next while. It is unsure how long she will not be allowed visitors. Hannah has been moved to a new room. It is a larger room with 2 beds (one for her and one for Mommy). She also has lots of room to play and walk around. We are still waiting for the results to see if Emily is a match to be Hannah's bone marrow donor. Let's all keep praying that her little sister will be her little miracle.

Wednesday, March 16, 2005

Hannah's First Round



3/16/05 - Hannah has been feeling very good the past few days. She is eating and drinking well. She is also walking around on her own. She had been in bed for so long and her legs were sore and getting tired easily, but now is enjoying longer walks around the hospital. Hannah remains to have a low platelet count (6), low hemoglobin (60's) and low white blood cells (>0.5) as a result of her chemotherapy and is getting blood transfusions almost daily. Her counts have not been rising as fast as expected. She is scheduled to start her second round of chemo in about a week, but we'll have to see how things are then. Unfortunately, yesterday Hannah developed a bacterial infection known as VRE. She has been having several loose bowel movements a day since Sunday and her stool has tested positive. VRE is Vancomycin-Resisitant Enterococcus, which means it does not respond to the Vancomycin antibiotic which is usually used to treat this type of infection.Therefore universal precautions are now in place and Hannah is in isolation in her room. She is not allowed to leave her room at anytime (pretty frustrating). She is not allowed any visitors (except mom and dad) who must were gowns and gloves when in contact with her. Although this bacteria is not a danger to a healthy person, it can be extremely dangerous to the young, the old and those who have a low immune system like Hannah. So healthy people can be a carrier and pass it on. This isolation will be in place until Hannah is cleared of this which could take up to several weeks. Hannah also spiked a fever yesterday and had to be restarted on IV antibiotics. They have yet to determine the cause of the fever. Karen and Stephen are meeting with the head of oncology today to determine a plan for Hannah's treatment. Thank you all for your continued support and well wishes. Hannah does have access to the internet at the hospital and loves having her emails and guestbook entries read to her.
2 weeks ago I had a central line put in. It has a port that hangs out and all my chemotherapy medication, blood transfusions, antibiotics and blood tests get given or taken through it. I don't need to get pricked by anymore needles because everything goes through the port.
I am keeping my mom busy all day. I go for long walks in the stroller around the hospital, play and do crafts in the playroom. I am able to do short walks on my own but I get tired easily. I am eating well and sleep well when I choose to. I spend time watching movies and playing my leapster. I miss all of you especially my little sister Emily. I get short visits with her when Grandma brings her to the hospital. Thank you all for your well wishes and prayers.We are still awaiting the news of Emily's test results to see if she is a match for the bone marrow transplant. We may have the results by Friday, lets all pray that they are good.
Mommy and I had the hairdresser come over and give us both a short haircut. Mommy felt if my hair was short it would be less traumatic if it started to fall out as a result of the chemo. I was able to save my braid.

Monday, March 14, 2005

Hannah start's her battle



3/14/05 - Hannah is still in hospital at Sick Kids in Toronto. She has completed her first round of chemotherapy. The doctors are very happy with the results. Her blood counts, mainly her platelets have been very low and she has been requiring platelet transfusions everyday. Once the platelets are stable she may be able to come home for a few days before her next round of chemo.