One Year Off Treatment

Today marks the one year anniversary of Catherine going Off Treatment. What a year it has been. In some ways, I feel like I am a normal mother again...I am not driving an hour each way once a week to a doctor for blood work, I am not rushing to shove dinner into my kids by 5 pm so that I can give my daughter chemo on an empty stomach before she goes to bed, and I am not going to a hospital when my child has a fever. And now that we have hit the one year mark, my first call when Catherine has a fever can be to my pediatrician, not an oncologist! Unfortunately, I know that I will never be a totally normal mother. I am sure that when the children of one of my friend's gets a fever, headache, or just everyday fatigue, they don't get a pit in their stomach wondering if it's cancer. Sadly, I have a feeling that will always be my initial reaction - even with Alex, and for a cancer Mom, I know this is normal.
What I have found even more amazing over this past year is the change in Catherine. First and foremost, she looks different. She doesn't have that moon face that is so typical in kids going through leukemia treatment thanks to those dreadful steroids. She actually looks like the older version of her 3 year old self. Her class pictures from when she was 4 and 5 look like a totally different kid than the one running around in my house today. She has grown a lot too. During treatment, her growth slowed dramatically and she went from being an average height girl to a below average one. Since finishing treatment, she has grown at least 1 cm each month and she is no longer the shortest kid in her grade. She also has the energy of her peers, which for me is the greatest thing to see. I always tell people that before Catherine got sick, she could run circles around other kids. We were always outside going for long walks, going to the playground, you name it. The moment she was diagnosed, she did a 1-80. I think that was one of the hardest things to watch. And she knew it because you could see her frustration. There were actually times she would cry about not being able to do what her friends could do in gym class. Now she is doing karate and softball and loving both. She runs around at the playground, "hikes", and she can jump for hours on my neighbor's trampoline. Slowly, but surely, the old Catherine is re-emerging.
The "experts" say that the rate of relapse drops dramatically after the one year off treatment mark. You have no idea how good it feels to have made it to this milestone. That said, I am not ready to let my guard down. I don't think I ever will. Reaching this milestone also means that we only head up to Guilford every other month! At her next well-visit, Catherine will now start her vaccinations where she left off. Given that she was last vaccinated at the age of 2, we are essentially starting over and will spend many days this summer getting caught up. Finally, when I fill out all her school forms, I won't have to fill out an extra form, as required by the State, on why she is not vaccinated.
With all that good comes the other side of things...I will now have to make appointments with Yale's Heroes Clinic to have follow-up tests on the after effects of the chemo on her heart and bones. And, she will remain on a 504 Plan at school so that her teachers can keep an eye out for potential learning disabilities which are more common in female cancer survivors and tend to show up about 3 years or so after treatment. Such is our life, but to have to deal with the after effects of chemo on your child, means that you child is still alive and that is really all I could ask for.
So with that, I have decided to make this the last post on our blog. Dave and I started this journal of sorts to keep people up to date on all that was happening to Catherine in those crazy first months, but as time passed, and our lives fell into a routine, it became a way of documenting Catherine's treatment for Catherine. I would like to think that all this will be a blur to her one day, or as the ER nurse said on the night she was diagnosed, "a blip on the radar screen of her life". Maybe one day she can look back on all this and see just how amazing she was at such a young age and how the most horrible experience in the world made our family stronger, wiser, and so thankful for everyday we are together.

Catherine's Surgery

So Dr. Touloukian's office called to schedule Catherine's surgery to remove her mole. Mean mother that I am, I told them I wanted to do it during one of her breaks as I hate taking my kids out of school if I don't have to (I even scheduled her Make-A-wish trip during last year's winter break). The surgery will be on February 18. Took me about a day to realize that that date had some meaning...her surgery will take place exactly 3 years to the day that she went in for surgery to have her port placed and then to have her first dose of intrathecal chemo (meaning that the chemo is injected directly into the cerebral spinal fluid) and a bone marrow aspirate to determine just how many leukemia cells were present. Just realizing it made so many memories flood back for me. Her diagnosis was on February 16, the Thursday before President's day so the surgery fell on a Saturday of a holiday weekend. The surgical team (which was headed by Dr. Touloukian) was called in especially for Catherine. It was 8am when they wheeled my crying child down (along with her equally hysterical mother and stoic father). I remember the doors opening up and just seeing a sea of doctors, the surgeon and his team and then the oncologist and her team. After some discussion of what would take place, Catherine was taken away. Dave and I were in the waiting room by ourselves trying to process all that was happening to us. It was very surreal. Three years later and there are times I still can't believe it all happened. The recovery room was just us and the one nurse who came into help out, comforting us and telling us that Catherine would be okay. After that we were brought back to her room and our education on all the medicines began. We were back down there the following Friday for another dose of intrathecal chemo and another bone marrow aspirate, but this time the place was open for business so Catherine had to be isolated. It was the following month when we had to go back for all the same things, but this time to also determine how effective the first month of chemo was, that Dave and I were in the waiting room with the "general population" of parents. I remember this one family going on and on and on about how upset they were about their child's surgery. I can't remember what it was, tonsils being removed or ear tubes, something like that. And I was thinking yeah, it's tough to have your kids going through surgery I get that, but I wanted to grab this woman by the shoulders and shake her and say...get over it, my kid has cancer and she is in there having chemicals pumped into her body right now so shut the f**** up already.
Anyway, I had always hoped that when Catherine's port was removed last June, it would be my last time at Yale. I know being there that day will be difficult for me. This time of year always has been since her diagnosis. Last year we were flying to Disney for her Make A Wish trip. It was fun, but it only emphasized the fact that she was a kid with cancer. My consolation this time is that we are proactively preventing cancer, not being blindsided by an unbelievably life changing diagnosis.

9 Month Check-Up

Today was Catherine's 9 month check-up in Guilford. Dr. Joe was unexpectedly on call so we met with the head of pediatric oncology at Yale, Dr. Gary. He was very nice and I badgered him, as I always like to do to doctors who I don't know very well, with millions of questions. My questions were primarily scientific ones, such as whether or not they can test for these chromosomal abnormalities that eventually lead to leukemia in the womb. Answer to that is no, but he was fascinated by the fact that I donated Catherine's cord blood to research after her diagnosis letting Viacord know when Catherine's diagnosis was and what her chromosomal abnormality was. He asked me if they have ever gotten back to me on that and sadly the answer to that is no. I personally think Viacord was given such a unique opportunity to research this as cord blood collection is relatively new. Wouldn't they be the heroes of pediatric cancer research? Unfortunately, I don't think they have used her cord blood in that way. I tried though.
We also discussed how her ANC and platelets are not yet those of a normal child and he reminded me that it takes quite a while for the body to recover from 26 months of chemotherapy. He actually thinks her numbers are great and that I should be happy - ANC 1887, hemoglobin 13.4, and platelets 141,000 (I was thrilled with that number). He seemed real happy so I guess I should be happy.
Then it was off to Yale, a hospital I was really hoping to never step inside again, but Catherine needs to have a mole removed from her knee as it will eventually become melanoma and I would never have that done anywhere else but Yale. Odd feeling walking into the place; I feel oddly at home there...probably the result of too many nights on 7-4. Certainly easier to go in there without her having cancer. The surgeon who did her two port-a-cath surgeries will do this surgery too. He's an excellent surgeon so I know she is in good hands. Just frustrates me that I have a kid who had leukemia and now at the age of 6 needs to have a mole that will eventually become melanoma, the deadliest of the skin cancers, removed. Damn those 9/11 terrorists who made me breathe bad air while I was pregnant.
Other than that it is the same old thing here. Just lots of snow and more snow and more snow. Will it ever end??

8 Month Check-up

Another month down. I was particularly nervous with this visit given the virus she battled a few weeks back. I knew it would effect her counts, and it did, but it wasn't horrible...ANC - 2132, hemoglobin - 12.4, and platelets - 115,000. I just knew her platelets would take the hit for the rest of the gang, and sure enough, this morning she woke up with a bizarre bruise on the top of her hand (even the nurses and doctor made note of it). I think it's her body's way of getting me mentally prepared for a bad number so that when I see it in black and white I am not totally devastated. I think we have all accepted the fact that she has naturally low platelets, but I will always hold out hope that one day it will fall into the normal range and actually stay there.

As for the fever, it lasted a whopping 3 days. My consolation was that a good chunk of her class was sick and then eventually I got it, providing me with some sense of comfort in a perverse way. Most upsetting about the virus was that it puts the thoughts of relapse and how abnormal our lives are front and center in my mind again. And when that happens, a buzzing goes through my head and I can feel myself shutting down while going through the motions of my daily life that I can't explain. I had it when she was diagnosed and I think it is some kind of internal coping mechanism. During her treatment I dreaded fevers because they meant a minimum 48 hour hospital stay. I would sit in the hospital and look forward to the day when she would have a fever and I could take care of her at home like a normal mother. When this fever came, it made me realize, I will never be that mother. Even Dr. Joe tells the fear will remain with me even when she is an adult. And at least at the hospital, they run a litany of tests to check for certain viruses and bacterial infections. Now I go to a pediatrician who checks her eyes, ears throat and lungs and in reality guesses what the ailment may be. Not to put pediatricians down, but unless they are drawing blood and sticking q-tips up your kids noses (they run tests on the mucus) or getting x-rays on their lungs, they truly don't know what is ailing them. For those of you wondering why something as simple as a fever would upset me...a persistent fever is a sign of relapse. That is why if she has one that lasts at least 3 days, she has to see Dr. Joe. Our saving grace on this one to avoid the trek to Guilford was that she exhibited strong signs of a respiratory infection and her energy level held up. Again somewhat comforting, but I have a few more grays. There are times I wish I could put her in a bubble, but I can't and I know this won't be the last fever this winter. Of course a few other things just put me at unease. When she was finally ready to go back to school, it snowed and the kids had off. Catherine loves the snow and played outside for about 2 hours. I have pictures of the kids sledding that remind me so much of the pictures I have of her sledding just 5 days before her diagnosis. Looking at them actually made me cry and also made me realize that whenever I look at a beautiful snowfall, I will always be reminded of that day in February that forever changed our lives. So it brought me back to that time and once those thoughts invade the front of your memory, it takes a long time for them to go back.
I know this is a depressing post so I will end it by saying that we did have a lovely Christmas and New Year. The kids had a great vacation, the highlights being dogsitting our friend's dog, which the kids loved, and their first ski lesson. Catherine was fantastic and Alex got better as the lesson went on. I guess Dave and I need to brush up on our ski skills and start hitting the slopes with the kids. So until next month....

First Post-Treatment Fever

The day I have dreaded has finally arrived...Catherine's first fever post-treatment. I know it's that time of the year and just about every kid around town is sick, but it is still worrying me. We are now on Day 2 of the fever and I made my obligatory first call to Dr. Joe's office. Dr. Farzana was there today and she told us to go to the pediatrician, so off we went. Today we saw Dr. Shenoy who is relatively new to the practice and hasn't really experienced all that there is to experience with Catherine. It was kind of funny because after looking at the panic in my face, she left the room, came back about 5 minutes later and said she wanted to really read Catherine's history. Given that Catherine has asthma, she spent quite a bit of time listening to her lungs and the diagnosis is either an upper respiratory virus or the beginning of bronchitis (she is coughing a lot with phlegm coming up). In the event it is the latter, we have started on antibiotics. On the way to Griebs Catherine asked me what we were doing and when I told her she said, "but I am done with taking medicine". I had to explain to her that when you get sick, you sometimes take medicine, but not all medicine is chemo...that is how warped the thinking in my house is. So in a nutshell, she is probably fine: she is not lethargic, wants to go to school and is ready for the next playdate, but until her fever is gone...I will still worry and apparently it is normal because MJ (from Dr. Joe's office) called to let me just talk out my fears. I suppose the fear will never go away. And, while it's nice not to have to be admitted to the hospital as we have in the past, the other side of that is that when you are in the hospital, you are so aware of where her immunity stands and what exactly is going on with her bloodwork in terms of viral or bacterial infections. I guess I should be happy it didnt happen the week of Christmas!

7 Month Off Treatment Check-Up

Well, we have made it to the 7 month mark...very exciting. Catherine continues to do well. She is getting stronger each day: today she told me that she ran faster than 3 of her classmates at gym, usually she is the slowest; she has grown so much in the last few months that the nurse actually did a second check of her height today; and her teacher told me that her fine motor skills have improved tremendously since September. All good stuff to say the least yet it is always amazing how these trips to Guilford simply drain me. I am just tired to the bone right now. I know it is hard for people to understand having not been through what we have, but her being off treatment is so much harder than when she was on. The weekly trips to Guilford were nothing compared to these monthly trips. Of course, back then, if any of her counts were low, you could just blame it on the chemo. Now when a number is below normal you wonder, is she sick? is the cancer making its way back? You just don't know and sure enough those damn platelets of hers have fallen below normal again (137,000). I knew they would be low...she has a weird bruise on her foot from her shoes. Dr. Joe's only explanation is that she is just one of those kids whose platelets stay abnormally low. It's just frustrating for me as unusual bruising was the first sign of her cancer and she received more platelet transfusions than anything else during treatment. Leave it to me though to focus on that number versus the awesome ANC (3300) and hemoglobin (13.5). If those numbers weren't good I would really be freaking out.
I also took Catherine to the dermatologist recently and sure enough she needs a mole removed (either that or we get it checked every 6 months). I tell you, something really went wrong when she was in the womb (and you know deep down I blame the 9/11 terrorists who made me breathe in all that bad air when I was pregnant). Ironically, the dermatologist recommended the doctor at Yale who did both of Catherine's port-a-cath surgeries. I will call him soon and get that scheduled...who wants to go to the dermatologist every 6 months? Not me.
Other than that we have had a busy and fun month, as usual, with all the kids' activities and all the volunteer stuff I do. I can't believe we are already getting ready for Christmas. Catherine has a long list of gifts, which she adds to every time she sees something on television that she wants (she actually pauses the TV and gets her list). Alex... I'm just on my own with him. He doesn't know what he wants. At the kids' insistence, the Christmas decorations are out of the attic...not up, but out of the attic which is half the battle. We will work on decorating all week. With that I think I will close now as I really am very tired and can't really think straight, so until next month!

6 Month Check-up

I cannot believe that we have made it to the 6 month mark. This is actually a small milestone as Catherine no longer has to take her daily antibiotic (the Dapsone) and she can now have her beloved peanut butter and honey sandwiches. She is very excited. She can also get her ears pierced, but I told her we'll do that for her 7th birthday. And finally, finally, finally her platelets are in the normal range at 157,000 (low end of normal, but normal nonetheless). It is about time. The only explanation I have in my head is that the steroids really propped up her counts and at least her platelets and her ANC sort of nosedived in the aftermath and have slowly worked their way back up. Her ANC was 2010 and her hemoglobin was 11.8. For the first time since she finished treatment, I left there somewhat happy.
Dave and I also met with the neuropsychologist a few weeks ago. Solely a baseline test and nothing she told us came as a surprise. Catherine is a visual learner, an excellent reader, and a child who works too fast and needs to slow down. Now it is up to us and the school to watch her over the next few years as girls more than boys tend to develop learning disabilities after cancer treatment. Her fine motor skills were definitely affected by the treatment. The neuropshychologist noted this as has her teacher. The reason is twofold: she was diagnosed at an age when kids are honing in on their fine motor skills (she was too tired to do any such thing) and the many many doses of Vincristine left her with weakened muscles in her extremities. They say it will take a full year for her to get back to normal and regain strength, but we may look into occupational therapy to help her along. If these are the only after effects of her treatment, I will be very happy.
Finally, I just want to update you all on our friend Mike who was left paralyzed in a bike accident. He continues to do well and is receiving the best rehab care there is at Kessler in NJ. A fund has been created for his family to help offset the costs of his care and all the work that will need to be done to get him a handicap accessible car and a handicap accessible home. Last week, a Halloween Party was thrown for him by members of our wonderful community and in 2 hours we raised over $11,000!! So amazing. If you would like to contribute, even just $10, please send your check to:
The Michael Loura Trust Fund,
c/o Joanne Morris
132 Farmingdale Rd.
Wethersfield, CT 06109
I know times are tough right now for so many people, but having faced some pretty awful moments myself, I can truly say that having your family, friends, and health are the most important and we all need to look out for each other.
With that, I hope there will be no need to update until our next check-up just before Thanksgiving. Happy Halloween!!