Little Brothers Are Great

On Monday, Catherine officially completed Delayed Intensification!!! Now we just wait for her ANC to reach 750 and her platelets 75,000 and then we start Long Term Maintenance. On Monday Catherine's ANC dropped to 189 and her hemoglobin was 8.5 - her platelets were all of 29,000. Not a great number, but they decided to hold off on a transfusion as she did not exhibit any weird bruising. They scheduled us to come back in on Wednesday to check the platelets again. But why wait until then?? On Tuesday morning, I left Catherine and Alex playing alone in the basement while I ran upstairs to get something. When I came down, Catherine was crying while Alex was hitting her over the head like a drum with a toy in each hand. With each hit to the head a bruise showed up instantaneously. It was a scary site to behold, but I stayed relatively calm. I called the doctor and they said to come up for the platelet transfusion. So, I dropped Alex off with my friend Lynne, and began the drive first to Yale New Haven Hospital to pick up the platelets and then up to Guilford. While there, her counts revealed that she would probably need another platelet transfusion and a red blood cell transfusion by Friday. They told me to expect tranfusions during this phase but you always hope you might not need one, particularly a blood transfusion as it take 4 hours to get one. So between the blood and platelets, Catherine and I expect to be in Guilford for about 6 hours on Friday. As crazy as yesterday was, I had to laugh as Catherine and Alex are great playmates for each other and the hitting and pushing are typical among siblings, but in this case instead of an icepack to make her feel better and a timeout for Alex, she gets platelets and he gets a great playdate.

As an aside, seeing the kids get transfusions all the time always reminds me of how important it is to donate blood and platelets. Our family has been advised to not do so until she is 5 years into remission (they don't want her to build antibodies against our blood in the event she needs a bone marrow transplant). So, if you see a blood drive happening in your town, PLEASE stop by and donate. And, if you're really brave, donate bone marrow to the general registry, you could truly give someone a second chance at life if you end up being a match.

Last Dose of the Really Bad Stuff!

Today we received our last and eighth dose of ARA-C. Now we only have 5 more doses of 6-TG at home and then we'll be done with Delayed Intensification!! I cannot believe it. When I saw this stage in her protocol I dreaded it. On paper it is very daunting, but Catherine was a superstar. I actually asked the doctor if they were giving her anything because her energy level has been amazing. We've been taking walks around the block, playing with friends at the playground, and, after one of her treatments, took a ride to a place called Dinosaur Crossing where Catherine went mining for rocks and "gems". On top of that, her ANC was holding steady at about 1000. Dr. Elisha assured me they were giving her the right stuff and the day after this conversation, her ANC dropped to 590 and then today it went down to 360. They expect her counts to decline more before they can recover. Her hemoglobin has been holding steady at about 9.5 (normal is anything above 11). So far she hasn't needed a transfusion and we may get away without one. Her platelets have been falling as well -they've gone from about 200,000 on Monday to 118,000 today. These numbers will get her through the weekend, but we go back Monday to see if she needs any transfusions.

As a side note, Dr. Elisha and I had an interesting conversation as to why children with leukemia fare SO much better than adults. Turns out that the doses of chemo children get are much higher than adults because their bodies haven't been compromised by all the bad things that come with everyday living. Basically, if I got the doses of chemo that Catherine got, my bone marrow would be destroyed. Thought that was an interesting little factoid.

Heading Into the Home Stretch

Just a quick update. We went up to Guilford Monday through Thursday. Tuesday, Wednesday and Thursday we just got ARA-C. A powerful drug, but the administration of which has been so easy. It's a 30 minuute drip and we don't have to wait for her counts or bilirubin levels to be checked before they start it. Catherine's port was accessed all week so all they had to do was hook her up to the IV pole. Catherine did great and the doctors are so pleased by how she has handled everything - the 2 week break we had really helped her body recover and in turn is helping her body cope with this round of chemo. As expected her counts are aleady falling and we have been told to definitely expect a blood transfusion probably Tuesday or Wednesday.
We are scheduled for 4 more ARA-C rounds next week and 9 more days of 6-TG and then we get a break before starting Long Term Maintenance.

Happily, Catherine's energy level has remained high. Today was one of her best days - we stopped by her friend Caroline's house to deliver a few gifts and play in the backyard. Later that afternoon, we played hopscotch in the driveway (her version) and then played with some of the kids down the block from us. Catherine and Alex had a blast and are sleeping well tonight. Many of the kids at the end of our block don't really know Catherine or what she is going through so it was interesting to see how they reacted to her bald head. Some asked her why she had no hair and she simply said "I have a blood infection and the strong medicine made my hair fall out." That was it and the kids all kept playing. One little girl was a little nasty and kept calling her a baby, but Catherine, the strong kid that she is, just ignored her and kept on playing. Tonight made me realize that I really don't need to worry about the whole bald thing and how kids will treat her because she can really hold her own.

Six Month Anniversary

It was six months ago today that Catherine was diagnosed. In some ways I cannot believe how quickly six months have gone and just how much our lives have changed. I will never forget every detail of that day and especially that night, and the absolute despair I felt while crying in the arms of one of the nurses at midnight in a quiet dark hallway of the hospital. We have come so far since that awful night and continue to be amazed by Catherine's strength which helps us cope with all that we are going through.

As always thank you for all your love and support.

We Begin Again

We started Day 29 today. Catherine's counts were well over the parameters - ANC 1326 and platelets 169,000. It was such a LONG Day!! We were the first ones there at 7:30 a.m. and the last ones to go, walking out with the last of the staff at 4:30 p.m.! All her chemo took a total of maybe 90 minutes, but the hydration required for the Cytoxan was crazy. She received fluids for about 3 hours before it was administered and then for 4 hours after it was finished. Needless to say we spent a lot of time in the bathroom with many urine collections (checking for blood which would indicate damage to the bladder). Luckily, all the hydration worked. Catherine, as usual, did great. As is Catherine's MO, she never went completely under during the lumbar puncture and chatted up Dr. Darryl and Nurse Renee the whole time. She has to lay flat for 45 minutes following the LP and believe it or not, it is a struggle to get her to do so. With her new Dora watch on, Catherine waited quite inpatiently for 9:40 to arrive so that she could hit the playroom. There she played all morning with Molly, a 16 year old volunteer, and then in the afternoon, we watched a Scooby Doo movie, had a tea party, had lunch, played with a dollhouse, and painted dinosaurs. Busy busy!! The rest of the week won't be as long as the ARA-C is just a 30 minute drip and a 30 minute flush. And, to avoid having to poke her everyday this week, her port will remain accessed (so she has "tubies" taped to her).
Alex had a great day as well. Flavia, our babysitter, took him to 2 different playgrounds and showered him with much needed attention. By the time we got home, he was bathed, in his pajamas, and eating dinner. Thank God for her!!

Hopefully Only A 1 Week Delay

After last Monday's delay (which is fairly typical), Catherine was taken off all her meds to allow her bone marrow and counts to recover before starting the next phase of treatment. Catherine and I returned to the doctor on Friday to perform blood tests primarily to check her platelet count while Theresa spent the day with Alex. Last Monday Catherine's platelets were only 76,000 (75,000 are needed to start the next phase) so the doctors wanted to check them again on Friday to make sure her body was ready to handle the treatments. I am happy to report Catherine's platelets jumped to over 90,000 while her ANC jumped to around 800 (up from 360 on Monday) so if all goes well this weekend and her counts are stable Monday morning, Catherine will begin the next phase.

During the next phase, Catherine is scheduled to have a lumbar puncture with methotrexate, the first of 8 doses of ARA-C, and her one and only dose of Cytoxan on Monday. She will also start a 2 week course of 6-TG at home (it is similar to 6-MP). Catherine will also receive ARA-C on Tuesday, Wednesday and Thursday this upcoming week.

As an aside, as Catherine has been weaned from her meds this week it is amazing to see her energy levels increase and personality re-emerge. We often forget the powerful impact of the medicine Catherine takes every day. Each day without medicine, Catherine feels stronger and stronger. Her strength has improved to the point where I took Catherine and Alex to the playground, played hide and seek outside for an hour, took walks around the block and even convinced Catherine to ride her bike this week. I can't remember the last time she rode her bike. Uncle Joe, Aunt Valerie, Vincent and Joseph also came to visit on Saturday. Catherine ran around like a mad woman with her cousins playing soccer, (like Zindane and his bald head) baseball and volleyball.

Below is the latest picture of Catherine and her new Dora backpack.

Another Delay!!!!

The past week has been relatively uneventful, save for Catherine's hair loss. She has been off all chemo and her energy level picked up quite a bit. But as always, or so it seems, when Catherine is feeling good, her blood is doing something else.
The doctor's office called on Friday asking us to come at 7:30 a.m. instead of 8 to start Catherine's hydration early. Apparently, the Cytoxan she was scheduled for is tough on the bladder so she has to be overly hydrated to avoid any permanent damage to her bladder. To start Day 29, Catherine's ANC has to be at least 750 and her platelets 75,000 (the same parameters needed to start Day 1). When we arrived we were given the option of just doing a finger stick first to see if she met the parameters, but I wanted to be an optimist and told them to go ahead and access her port. Sure enough, Catherine's ANC was 360 and her platelets were 76,000. We can't seem to bring this awful phase to a close. Catherine was actually upset that we were going to be leaving - we had hyped up the fun we were going to have very well I guess. We will be going back Friday to check and see if Catherine will need a platelet transfusion. Hopefully she will not and the counts will come into the range where we can start Day 29 next Monday. Please pray that they do!
Oh, during our conversation with the doctor, it came up that I am not the most paranoid and nervous parent in the office, but I fall into the Top 5. Not sure if I am happy with that honor, but how can I not worry about my child.

She Really Hasn't Changed!

Catherine is about 6 months old in this picture. It is amazing to see how she hasn't changed one bit - she is still my baby girl. She has declared that she is bald and beautiful and really loves having no hair, especially at bath time. She did ask me why it had to come out and when it will grow back, but we've been up front with her about this since her diagnosis so nothing came as a surprise. Just want to do a quick thank you to my hairdresser Naela for doing this at the end of her work day and to the salon for not charging me. They made a big deal about how beautiful she looked and admitted to me the next day that they all cried when we left. I also want to thank my friend Lynne who came with me. If she weren't there, I may have cried during the whole process.

Before and After

This picture was taken 02/26/06 the first day out of Catherine's initial hospital visit.
The second picture was taken today (08/02/06)

Catherine's New Hair Cut

Three weeks into delayed intensification, Catherine's hair loss started to accelerate. Although she has lost hair throughout the process, her hair has been pretty resilient to all the medication (unlike my receding hairline). This past Sunday, Theresa and I noticed loose strands of hair throughout the house. As the week progressed, it became clear that the most recent dose of Doxorubicin would likely result in all of her hair falling out in short period of time.

Never to sit back and relax, Theresa decided we should "attack" the hair loss head on by giving Catherine a hair cut. Unfortunately for Catherine, we do not own a Flowbee hair removal system so Theresa used a scissor to take several inches off of Catherine's hair while Frankie Valley sang Beauty School Dropout in the background.

Let's just say the initial results were less than stellar. We decided to bring Catherine to the hair salon to fix the mess Theresa created. Catherine absolutely loves her new hair doo! I included some before and after picks in the next post.