Please Pray

It's been another joyful week here (and I'm being facetious). Thankfully Catherine continues to do well and is enjoying her summer. Each day I look at her and I know how lucky we are, especially when I see her running and jumping and truly becoming herself again. But then I just get a kick in the stomach. One of the many friends I met while at Dr. Joe's just told me that her daughter relapsed just 5 months after finishing her treatment. She is now at Sloan Kettering preparing for a Bone Marrow Transplant. She will be 5 years old this summer. She was diagnosed with High Risk Leukemia just after her 2nd birthday. This little girl was so tough through her treatment - the kind of kid who told the nurses to f*** off when she wasn't feeling well. She was in the hospital almost every 3 weeks during the 1st year of her treatment as her protocol was so much harsher than Catherine's. I truly thought she'd fool everyone and be done with all this. Please pray for her family. Another friend's 3 year daughter recently had her bone marrow transplant to hopefully cure her of aplastic anemia. Sounds benign, but aplastic anemia is a failure of the bone marrow to produce any white or red blood cells or platelets. The only cure is a BMT. Just before Catherine's diagnosis, we were told she either had leukemia or aplastic anemia - and we were told to pray that it was leukemia...just to give you an idea of how bad it is. Finally, a 9 year old boy in our town passed away today after a year of battling a brain tumor. There is no greater loss than that of your child and I ask that you pray for this family as they are forced to continue living without their son/brother.
So depressing I know and I always say that my depressing posts should really serve as a reminder to all of us that we are so lucky for everything we have. It is also my segue into reminding everyone that Lauren is starting her fundraising for her Annual Light the Night Walk which raises money for research for the Leukemia/Lymphoma Society. Her link is:
http://www.active.com/donate/ltnMelvil/2495_ltermini
Let's all help Lauren be the biggest fundraiser on Long Island!

Now I know everyone has their pet charities, but I'm also going to shamelessly throw out some other charities that you may want to consider as their funds truly go to research and helping others:
1) CureSearch - this is the group of oncologists who treat 90% of pediatric cancer patients (Catherine included). They have done so much with so little money. Imagine what they could do if they really had funding. Their website is http://www.curesearch.org/
2) The Make-A-Wish Foundation - I can say firsthand how amazing this organization is. They go all out to make the kids feel special and to make their dreams come true. I can honestly say that I cannot imagine having done Disney any other way.
3) The Leukemia/Lymphoma Society - they are known as one of those charities that really puts almost all of the money raised into research and helping families. I have to disclose that only 5% of their funds go to pediatric research, but I gotta tell you, leukemia is a very deadly cancer for adults so any progress they get on that front is important.
4) St. Jude - I have to admit that more of my money now goes to CureSearch as Catherine is a direct beneficiary, but St. Jude does not charge families who have no insurance and they are not afraid to take on seemingly hopeless cases.

Finally, do not forget to donate blood. I recently donated blood and went on the general bone marrow registry: check out www.marrow.org/

So while we are all enjoying our summers, let's remember just how lucky we are and to pray for those going through very difficult times. May they find the strength they need to get through each day.

Test Results In

Sorry for the delay in posting her test results. She is still in remission. The bone marrow aspirate did show some young lymphocytes, but they are not cancerous and are indicative of a bone marrow that is recovering (she had this at the end of her Delayed Intensification phase when it took almost a month for her counts to recover). However, this has nothing to do with platelets and he has no idea why hers are so low. The only answers are that she is fighting a virus or this is her baseline. Dr. Joe did say that if they are low again in 2 months, he may do another BMA. I ended up calling my pediatrician who really has been fantastic throughout all of this and even asks me how I am. He said that when he sees kids with low platelets, but everything else is fine, he usually has them come in for another check in 2 months. If the platelets are still in that range, then he takes that as being their normal platelet count and he said he has plenty of patients whose normal platelet counts are in the low 100s. He also believes that we should not discount the fact that Dave and his mother had ITP (an autoimmune disorder where the body attacks its platelets). Now he is not saying she has ITP, but it's something that we should always keep in the back of our minds and perhaps she had something before her leukemia diagnosis that was not diagnosed and the chemo masked. It got Dave and I thinking about how as a toddler, Catherine always had more bruises than her peers. In fact, the big bruise that developed on her back just before her diagnosis was not what sent me running to the doctor. I do recall thinking to myself that I should bring her in, but she said she had fallen and she was the type of kid to bruise so I thought nothing of it (famous last words as I was told by her oncologists that this bruise was internal bleeding from low platelets). Bottom line, perhaps, she does have an abnormally low platelet count. Of course this whole ordeal has shaken me to my core and even with good test results, I am not over it. My post-treatment honeymoon phase is officially OVER!! I stare at her constantly. I'm always asking Dave if she looks pale. When she is watching TV and just laying there, I pester her on whether or not she feels okay or is she tired. Every bruise (and there are so many) makes my stomach ache. The other day I picked her up from Nature Center camp and she had a bruise on the inside of her lip. I was sick to my stomach as that is not a normal bruise. I started to get that haze in my head and I was ready to call Dr. Joe (although this was on July 2 and the New England pilgrimage to the Cape had already begun and there was no way I was getting on I-95). Luckily, I showed it to a friend who said that her kids get bruises like that when they get bumped in the mouth and then I remembered that the day before, Catherine got whacked (accidentally of course) in the mouth by a friend in the pool. And here we are a few days later and the bruise is gone...only to be replaced by so many more because she is indeed so much more active and always bumping into things. Basically, I know going into our 3 month appointment that her platelets will be below 150,000...I've accepted it. I also know that the roller coaster ride of cancer is still on and bigger than ever with more twists and turns than I could have imagined. I have a favorite saying and when I get upset I just try to remind myself that today is a gift and that is why they call it the present so try to live life to the fullest.