First Day Of School

We have had a big week here in the Vogt home. Last Thursday, Catherine had her first play date since this whole ordeal began. It was the first time she had seen a child her age in over 5 weeks!! We went to Lynne's house and played with Caroline and Samantha (even Alex had a chance to play with Owen and Devon). As excited as Catherine was to see her friends, she did have trouble keeping up with them as her energy level is no where near what it used to be. The doctors and the social worker said that was totally normal and to not expect to see her old energy levels until she is done with chemotherapy. Either way, it was a big first step in bringing back some normalcy in her life. That's why when Dr. Elisha said to send her to school, Dave and I were very excited. We knew this would be good for her. Needless to say, I was very nervous about sending her, so I spent the whole weekend on the phone with and e-mailing the mothers of the other kids in her class and speaking to her teacher and the director of her school. When Tuesday morning came, Catherine said she was too tired to go. A little bribery from Grandma got her in the mood to get dressed and get going. Catherine and I were the first ones there so Mrs. Baldwin and Mrs. Mosher let us go in together so that Catherine could familiarize herself with the classroom. It was like she never left. She actually asked me to leave! The day went better than I could have ever hoped - at 9:30 Mrs. Leary, the director, called to tell me that Catherine was back to her old self, singing as loud as she could and answering all the questions being asked. And, surprisingly, she lasted the whole 3 hours! I definitely think school was what she needed psychologically. Catherine couldn't stop talking about it and sang songs the rest of the day. She can't wait to go back Thursday when the kids get to wear their pajamas and bring their favorite stuffed animal (Tyrone is going to school!).

On a side note, the eating has done a total 180. The 6-MP that she takes every night has had the side effect of killing her appetite. Now it is a struggle to get her to eat. Hopefully we can get something other than pretzels into her.

As always, thanks for all your love and support.

Catherine and Tyrone from The BackYardigans

Catherine was all smiles after a bath and a day with Aunt Lauren and Uncle Nick.

100% Remission. The start of Phase 2

As many of you are aware, we received excellent news this past Sunday morning. While Theresa was at the gym, one of Catherine's doctors called at 9:06am to give us the results of her third bone marrow aspiration and lumbar puncture. I actually had difficulty writing down what he was explaining to me and had to ask him to repeat it to confirm what I thought I had heard. Dr. Elisha explained there was no evidence of leukemia blasts in her blood and bone marrow. After 29 days, Catherine was 100% in remission. I couldn't wait for Theresa to come home from the gym to share the good news. I needed to share the good news with someone so I called my parents at home. Looking back, I probably should have waited for Theresa before telling anyone else, but too late. I immediately explained to Catherine that "her blood" was getting better and the doctors were very happy that the yucky medicine was working. Her face lit up like a kid opening presents on Christmas morning.

When Theresa came home from the gym, she marched over to the caller ID box to see if anyone had called and began to grill me on why Yale had called. I thought it only fitting that Catherine share the great news with her mommy. Needless to say, Sunday was a great day in the Vogt household. The only issue was that we had to wait until Tuesday to discuss the next steps in Catherine's treatment.

With much excitement and anticipation, Theresa and Catherine made the pilgrimage to Guilford Tuesday morning. Routine blood work was performed and analyzed while Dr. Darryl explained the next phase of Catherine's treatment. Experience has shown doctors that parents best handle the "mechanics" of the next phase of treatment if it is packaged in small easy to digest snippets measured in weeks rather than months. As such, we received a 4 week roadmap that begins this Friday.

Catherine was assigned to a standard low risk protocol based on how well she responded to her initial round of medicines, her chromosomal abnormality and remission status at the end of Induction. Importantly, we were excited to find out that all of her treatments will be handled on an outpatient basis. We had mentally braced for 3 to 4 night hospital visits every 3 weeks. Given Catherine's response and treatment protocol, this will not be necessary. Catherine will receive many of the same chemotherapy drugs she has received already including PEG-aspariginase, methotrexate and vincristine. The oral steroids that has caused the puffiness and insatiable appetite are being replaced with mercaptopurine (MP) to be taken at home.

Over the next several weeks, we expect the outward signs of the steroid treatment to subside. Maybe it is wishful thinking but her face appears less puffy to me in just 5 days. Her attitude, mood and energy levels have improved sharply the past several days. Catherine even changed out of her comfy PJs into a dress and tights and requested a trip to the playground. Although it is early, her personality is starting to emerge.

As always, thank you for all your love and support.

Day 29 - The end of "Induction"

It is hard to believe, but we have made it through the first month of Catherine's treatment, inarguably, the most difficult and intensive part of her road to recovery. This morning, Theresa, Catherine and I made the trip up to Guilford for quick blood work followed by a visit to Yale New Haven Hospital for another lumbar puncture, bone marrow aspiration and chemo treatment delivered into Catherine's spinal fluid.

Although Catherine had every reason to be grouchy this morning (she could not eat due to her procedure today) she actually smiled for the doctors and the nurses. Her blood work this morning was solid. Her ANC jumped to 3,692 up from 470 just 5 days ago, and her platelet count is now 310,000. Just four weeks ago, Catherine's body was covered in bruises and had virtually no immunity. Upon hearing the results this morning, it felt like we could finally see the light at the end of a tunnel.

Hopefully a harbinger of today's bone marrow test, Catherine's blood had signs of NRBCs (nucleated red blood cells). NRBCs are immature red blood cells produced in the marrow. When her marrow was packed with leukemia back in February, NRBCs were pretty much non-existent. We won't likely get the complete results from the bone marrow until Monday, but her medical team is encouraged by today's blood work which suggests her bone marrow should be in decent shape.

As for the next step, Catherine will receive her last dose of Decadron tonight for some time. The Decadron is the oral steroid that has caused the insatiable appetite and roughly 4 pound weight gain (which is pretty much all in her face and her belly). Hopefully over the next several weeks, her appetite will return to normal and her "puffiness" should be less pronounced. On Tuesday, we meet with the team to discuss the next phase in Catherine's treatment protocol. I don't have more details yet given each patient is treated somewhat differently based on a variety of factors including age, blood results, response to prior treatments and type of leukemia.

Hopefully we will get the bone marrow results sooner rather than later so I can post everyone, but at the latest expect some information by Monday.

Thank you and Charity

I just wanted to post a quick note thanking everyone for the outpouring of love and support we have received the past month. Catherine and Alex love the cornucopia of toys, books, videos and stuffed animals they have received from everyone while Theresa and I (ok really me) love all the meals that have been prepared for us . Each day the toys act as a pleasant diversion for Catherine enabling her to forget for a brief moment she is sick and put a smile on her face while the meals so far have been mighty tasty!

Since there is no easy way to write this, I will be direct. This experience has taught us that we have been very fortunate to have tremendous family and friends to lean on throughout this ordeal. The medical staff at Yale that has been part of Catherine's life for the past month has been amazingly compassionate, understanding and most importantly competent which leads me to my suggestion.

As many of you know, St. Jude Children's Hospital has been an important charitable organization in our lives from the moment Theresa and I were married. While difficult, Catherine's ordeal has crystallized in our minds how important of a role St. Jude fills. All patients accepted for treatment at St. Jude are treated without regard to the family's ability to pay. Not every child that is diagnosed with potentially life threatening maladies has access to leading medical care that a hospital like Yale or Sloan Kettering can provide. This is where St. Jude fills an important role in my opinion. This is the reason I make a socially awkward request that if possible donations be made to St. Jude or the children's charity of your choice in lieu of toys for Catherine and Alex. No matter the size of the donation, every dollar helps in providing care for those less fortunate than Catherine.

I apologize to anyone in advance that takes to offense to my suggestion and I understand if you want to buy Catherine or Alex a great new toy or even want to bring me ice cream! I included links in the blog to some cancer resources as well as St. Jude for more information.

Thanks you again for your thoughts and prayers.

I found this picture from May 2005 around Catherine's 3rd birthday. I thought it did a great job of capturing the true Catherine.

Day 24 - Encouraging Blood Work...5 Days Until Next Bone Marrow Aspiration

On Friday, Theresa and Catherine made yet another trip to the doctor's office for her twice weekly blood test and another round of Vincristine. Important to note, prior to Friday, Catherine had not received a platelet transfusion since March 4th so I was expecting a transfusion in addition to the chemotherapy. Boy was I ecstatic when Theresa called me to relay the results of Catherine's blood work that morning. Her platelet cound had jumped to 175,000 from just 58,000 three days earlier. Given the life span of a platelet is generally 9-10 days, the results demonstrate Catherine's bone marrow was producing its own platelets. To give everyone perspective, on February 16th, Catherine entered Yale Hospital with a platelet count of just 10,000. Normal range is 150,000 - 350,000. Back in February, the leukemia cells were so tightly packed in her bone marrow (roughly 90%) that platelets were not being produced. Her hemoglobin remained in a healthy range while her ANC (absolute neutraphil count) which is a measure of her body's ability to fight off infection jumped to 470! Again for perspective, when we entered the hospital through the first 10 days or so, Catherine's ANC ranged between 0-8 which meant she was neutrapenic (no immune system). Generally an ANC count between 500-1000 provides people enough protection to fight off infection so hopefully her body can begin to fight off even simple illnesses like the common cold.

While Catherine's mood swings continue, we are beginning to see her have more of an understanding of what is going on. We have always said that she understands enough to be confused, but the doctors and social workers have told us to let her ask the questions rather than force the information on her. She is aware of the fact that she has a "blood infection" called leukemia, but while she had been telling us not to talk about it, this weekend she started asking us some questions and telling Theresa's friends that her doctors give her "pokies and tubies", but they don't really hurt. Hopefully her questions continue which should make all the doctors appointments and procedures go a littler more smoothly.

As we mentioned earlier, Day 29 of Induction is this Friday (just in time for March Madness). Catherine is scheduled for surgery at 12:00 at Yale New Haven Hospital. Catherine will undergo a lumbar puncture (to make sure her spinal fluid continues to be free of leukemia) receive chemotherapy in her spine as a preventative measure and her third bone marrow aspiration to determine how much leukemia remains in her bone marrow. Her blood has been leukemia free for the past 2 weeks while her leukemia concentration in her bone marrow has declined from 90% on February 18th to 5% on February 24th. Let's hope we go down to 0%!!

Day 20 - Chicken Legs and New Pajamas

Since my last post on Friday, the past several days have been mixed. Saturday my parents came to visit and more importantly kept Alex occupied most of the day and even kept Catherine company while Theresa and I ran errands. Catherine was in great spirits and was very active (all things considered) on Saturday playing with new toys she received as gifts and even spent time playing on the Internet. The picture in this post was taken Saturday.

Sunday was a different story. The cumulative effect of the treatments and fatigue put Catherine in a foul mood. From the moment she woke up, she complained of a headache as well as a stomach ache. She complained "her belly button hurts" the entire day non-stop. As such, most of the day was spent on the couch either watching TV or sleeping. Since Catherine was first diagnosed with ALL, I would say Sunday was the most physical pain I have witnessed. The doctors told us to expect days like Sunday but it still sucks.

Theresa's mother came to help on Sunday and watched Alex while I returned to work on Monday. Theresa made a trip up to Guilford for blood work on Tuesday. Catherine's blood work was surprisingly good. No transfusion was needed as her platelet count held steady and even her ANC (absolute neutraphil count) was in the range they would expect going from 8 last week to 140 this week (you need a count of at least 500 to fight off an infection). She even took a toy from the toy closet this time and showed the doctor that she does indeed speak and smile on occasion.

On a side note, Catherine's food cravings have changed the past 3 weeks. Her latest "comfort food" is chicken legs baked in the oven. When she eats them, all that is left is the bone! As a consequence of her increased food intake and retention of fluids, some of her clothes needed to be cut to fit over her belly. Theresa even bought new pajamas for Catherine today. She bought a night gown that I swear looks like one an 80 year old woman would wear to bed. Wearing her "dressing gown" as she calls it, and walking slightly bent over and very slow because of the medicine, Catherine certainly looks the part of an old lady.

As for the next step, Catherine continues to take her medicines twice daily and will get another round of Vincristine on Friday. She is scheduled for a lumbar puncture (with chemo treatment) and bone marrow aspiration on Friday, March 17 (let's hope the luck of the Irish will be with us!). The 2 procedures will be done at Yale New Haven Hospital (back where we started). The results of the bone marrow aspirate will hopefully show little to no leukemia left in her marrow marking the end of the Induction phase of her 2 1/2 years of treatment. The next phase, called Consolidation, will depend on those results.

Cherub to Devil

I had to post this picture to give everyone a sense of the impact of steroids on Catherine's personality.

Day 15 - Another Round of Platelets and Vincristine

Its hard to believe that today marked Catherine's 15th day of treatment. While it feels like time is standing still, the calendar reminds me that it is now March with Spring right around the corner. Today we made the hour long trip up the oncologist's office in Guilford, Connecticut for another transfusion of platelets, blood tests and a third dose of Vincristine. I am appalled to note that I can't even recall the number of platelets Catherine has received through the first 15 days of her protocol. My best guess without going back through her medical records would be around 6-8. I only mention this to illustrate how important it is for people to donate blood and platelets when they are healthy. Each patient treated for leukemia responds differently to the treament but it is fairly easy to see the amount of blood and platelets consumed each year only by leukemia patients. Theresa and I and the rest of the family are not allowed to donate at this time. While our doctors do not anticipate Catherine ever needing a bone marrow transplant, should the day ever come, the bone marrow cannot be donated by someone who has also donated blood and platelets to her. When this ordeal is over, we definitely plan to become regular donors to the general pool.

Catherine is currently following a fairly standard protocol for the treatment of ALL. She receives oral steroids twice daily for the first 29 days along with several preventative antibiotics to protect her from bacterial infections as her immune system is non-existent. Her ANC (absolute neturophil count) on Monday was 8. To put in perspective, a reading of 500 or greater is needed for Catherine to have visitors or go to a play date. In addition, Catherine has received 2 doses of chemo in her spinal fluid on Day 1 and Day 8 and PEG asparaginase administered into her thigh muscle via an injection on Day 4 (this powerful shot is designed to starve the leukemia cells of its food supply). Lastly, Catherine is on the drug Vincristine. She has received it on Day 1, Day 8 and today Day 15. The Vincristine is administered through her catheter implanted in her chest which leads to a sub clavicle vein. Following her Vincristine treatments, Catherine exhibits the common side effects of the drug including jaw/tooth pain, back pain, headache, weakness and balance issues.

All the medicine and treatments Catherine has received over the past 15 days are beginning to have a noticeable impact on just about everything in Catherine's life. The oral steroids have resulted in an unsatiable appetite. Catherine awakens 2 to 4 times a night with hunger pains which continue incessantly until she falls asleep. My guess is she consumes more calories a day than both Theresa and I combined. One day last week she ate 15 egg sandwiches along with pasta, potato chips and various other snacks. The steroids have also changed her appearance. While she always had a "roundish" face, her cheeks have grown much larger and her belly looks like her dad's stomach. She has a cute little pot belly resulting from the retention of fluids. The medicine cocktail she takes has also sapped all of her energy. She fatigues easily and spends most of the day sitting in her favorite spot on the couch watching TV or playing an occasional game of hungry hungry hippo with me. She has started napping again (she has not napped since she was 2) and even falls asleep 1 full hour before her normal bed time. Perhaps the most frustrating part of the medicine is the impact on her personality. We were warned by the doctors that they will have a very profound and extreme impact on her moods. Boy were they right. In one minute she will be speaking lovingly about her brother Alex to instantly enraged like Linda Blair in The Exorcist by something someone does or says. We know her mood swings are not her true personality but it is still very frustrating and causes angst as we can't console her or calm her down.

Well I have written a decent amount for now. As always, Theresa and I are very grateful for all the best wishes and help we have received.