Quite A Scare

Well our 2 month off treatment appointment did not go as smoothly as I had anticipated. To backtrack... at Catherine's one month appointment her platelets were 135,000, below normal which is 150,000 - 450,000. This was a drop from 215,000 the day she finished treatment. A bit scary, but Dr. Farzana assured me that all was well and we perhaps caught her platelets on a down cycle. All her other counts were great - ANC 2100 and HGB 12.0 (for the first time in over 2 years she wasn't anemic!). As Dave and I have said earlier, her energy has been great and it's been a joy to watch what she is like without all the chemo. Get her counts back on Monday and her ANC was fantastic - 2800 with her HGB at 12.6. Her platelets were another story at 116,000. MJ, the Nurse practitioner and Dr. Joe were asking me if she has been sick lately (no). With no obvious answer to why her platelets are so low, Dr. Joe said he needed to eliminate the possibility that she has relapsed and said we needed to come in the next day for a bone marrow aspirate. This was just like punch in the stomach. I just started crying and Amy (the social worker) and Renie (one of the nurses) took me behind closed doors to let me cry and to let me know that this kind of thing is normal. Just last week they had a patient who was sick and weak, all her counts were low - tell-tale signs of relapse - and she was fine, just a nasty virus.
The rest of the day was simply horrible. Catherine kept asking me why I was crying and I tried to stay as far from the kids as I could. Dave took yesterday off and we went as a family to Guilford. I felt horrible that Catherine just had her port out and they had to draw blood from her vein which was no fun. Long story short, Dr, Joe doesn't see any cancer cells on the slides. The sample is still being tested for any chromosomal abnormalities and the maturity of her B cells (the ones that were cancerous). We are praying that that all comes back fine. So why are her platelets so low? She either has a virus (our bodies are always fighting off something and oftentimes viruses are in there wreaking havoc on all our cells including the platelets) or she may be someone who naturally has low platelets. We just don't know. Dave and I both agreed last night that this experience was almost worse than the day of her diagnosis...probably because we understand this disease so much more and it is frightening. I actually threw up last night from all of the angst and worry. It has also planted that extra seed of worry inside of me. She has been doing so great and it has had me thinking that we have probably conquered her leukemia. This scare has made me realize that we still have a long way to go and to not get too comfortable yet. So I ask that you all continue to keep Catherine in your prayers - she has been through too much and I just want her to be a normal kid and stay cancer free forever.

Port Free!

Today Catherine had her port removed in a very simple 20 minute procedure where they go in through the original incision and just take it out. The surgeon who placed it was the one who took it out which is how they like to do it up at Yale. When I scheduled the surgery, the hospital asked me who placed it. I laughed and asked them if anyone ever remembers and she laughed back and said no. He was a very nice man and I'm glad that he was the doctor willing to come in on that early Saturday morning of President's Day Weekend (normally there are no surgeries on weekends). The surgeon, all the nurses, and the anesthesiologist all congratulated us on getting to this point and I have to admit that I got teary when she was in the recovery room. Tears of joy of course and utter amazement at how far we have come. The last time we were in pediatric surgery section was at Catherine's one month bone marrow aspirate back in March of 2006. Our first time of course was when they put in the port and I will never forget just seeing a bunch of doctors (a surgeon, an anesthesiologist, an oncologist, a nurse, and some residents) all in their scrubs and masks wheeling my daughter away for what would be her first day of treatment. Today I walked out with a little girl whose hair is all one length again (she got her haircut into a bob yesterday so it doesn't look like hair that has been growing in) and she is port free. Now when she gets a fever, I don't have to drive 40 minutes away to the hospital!! As much as I love Yale New Haven Children's Hospital, I hope to never step foot inside those doors again!

By the way, I was indeed shocked to see Dave's post. I have to add that Catherine also got an excellent report card where she exceeded grade level in everything. She can read and write and do simple math in her head. It is absolutely amazing what they learn in kindergarten. Her energy level has increased dramatically and we are just enjoying life off treatment and looking forward to a fun and relaxing summer.

Pre-surgery update & Field day!

Theresa will likely be shocked I posted on the blog given that I had not posted in well over a year but I just wanted to provide everyone a brief update. On Friday, Catherine is scheduled to have her port removed. Historically Dr. Joe prefers to wait a bit longer than a month post treatment to remove the port but given several recent cases of port infections, he decided the port will be removed earlier than anticipated.

Three days following the surgery, Catherine and Theresa will make the now monthly trek to Guilford for Catherine's "check-up". I anticipate a lengthy post by Theresa following the visit so I won't bore anyone right now with the details.

On a lighter note, Catherine participated in "Field Day" today at Tokeneke (following several weather related postponements). Catherine and her fellow classmates competed in time honored elementary school events including relay races and tug-o-war. Watching some of the video Theresa filmed and seeing Catherine's blue ribbon made me realize how far she has come in 2+ years. If you would have told me 2+ years ago that Catherine would be running and passing a baton to a classmate and pulling with all her might on a rope I would have politely smiled while watching Catherine sleep on the couch, fatigued from all her treatments. While she does not have the same energy level as before her diagnosis, her recent increase in energy is amazing to watch.

One last note, I will try to remember to post updated pics of the kids shortly!