Days 102 -103 (June 26-27)
Happy Birthday, Haley! Yes, she is one year today (june 26th). And what a year it has been for this girl. I had a hard time with what to do about her birthday. I felt strongly that it was tempting fate. However, I think any cause for smiling, celebration, and an ice cream cake would be good for all of us. So on her actual birthday, Anna bought her balloons, and we just had good family time. But we waited for today so we can share the birthday with Grammy, Gramps, Aunti Jojo, Uncle Dave, and baby Lily. I took the girls to the suburbs and we had ice cream cake with everyone.
Also, Haley had her first clinic visit with her Hematologist here in DC. What I really like about him and what I’ve always liked about him is that his sweet bedside manner is only matched by his exceptional knowledge about the blood. For example, he was quick to get us through clinic quickly, since there were so many people there, all potential petri dishes waiting for Haley and her lack of immune system. But just the same, when I asked him how she checked out, he said “well I heard the murmur, but that’s because she’s anemic.” He says the flow of the blood sounds different when someone’s anemic. Then he sketched out the feedback loop between the blood, bone marrow, and kidney, and demonstrated how the missing hormone works. As you all know, I must be well read about everything when it comes to Haley’s health, and it’s doctors like him that make the knowledge emotionally bearable.
Anyway, the kidney is the thing that senses whether or not the body has enough oxygen (carried by the hemoglobin), if it doesn’t, it releases the hormone erythropoeitin to the bone marrow, and the bone marrow stimulates its megacells to pump out more red blood cells. She has the megacells, and her kidneys are working. It’s just the hormone that’s tricky.
There is a difference between the nurses here and the nurses where we were for the transplant. While I like the nurses here, I really appreciate the nurses back in New York. They were much more kid-friendly, and knew how to work around the kids’ illnesses, not despite them.
We were the guests today.
Funny moment was Uncle Dacve trying to figure out what funny thing to do to get on the funny moment (congrats, you did it).
HAPPY BIRTHDAY HALEY! WHAT A WONDERFUL DAY!
we hope to come and share some more ice cream cake with you all soon. and welcome home — just in time for a real DC summer.
glad to hear the doctor is cool, too.
much love lauren marty rachel and juliana
June 28th, 2007 | #
Happy Birthday! What nice celebration for our precious Haley.
Sounds like this doctor is wonderful about sharing information. It’s so important to understand exactly what is happening. Makes you feel more empowered. Hope all clinic days go smoothly.
May the days ahead be filled with ice cream cakes and balloons for oodles of celebrations.
June 28th, 2007 | #
Happy birthday, Haley.
Wishing you many happy returns of the day, Miriam & Steve
June 28th, 2007 | #
Hooray for the birthday girl and her family. I’m so glad the doctor is someone you trust and feel confident in. That has to make the transition easier. I hope other aspects of the transition are going smoothly as well. It sounds like Anna is taking camp right in princess stride. The next time it’s not a code orange day, and you’re out for a walk, give me a call and I can be your Starbucks agent.
June 28th, 2007 | #
happy birthday haley–it sounds like a lovely one. so glad you have a good doc here, tansy, and seem to be getting settled. big kisses for our one-year old. yeah!
June 28th, 2007 | #
Happy Happy Happy 1st Birthday to Haley!!!!!
Your smile lights up my day every day!!!
Love and Hugs,
Lona
June 28th, 2007 | #
ONE YEAR OLD! Congrats, little darling! That is a milestone for any child, but for Haley, especially special.
So glad you are back. I’m nursing a sore throat and a cold right now so I am staying completely out of the District of Columbia until I am fully healed. At that point, I hope to be able to be a DC “auntie.”
Your present doctor sounds just perfect. Funny about the nurses. You know, I’ve always found NYC to be friendlier than DC in interesting ways. Sounds like the nurses might be one of those ways.
You know, Tansy, when you get back to writing (and hopefully kids’ books will be part of that) you are going to have an even deeper insight into human nature and life than you did before. Of course, all of us would rather have insights come to us in less stressful and scary ways, but I think I’ve come to accept that those challenges and how we handle them turn out to be a big part of what life is all about. Go figure!
Many hugs to all. I am thrilled that the blog continues. xxoo Cristina
June 29th, 2007 | #
Dear Haley-
I’ve wanted to write to you for a while, but was always hesitant to intrude on the magical circle of support that seems to float around you. I am just a friend of a friend. A few days before your transplant a close friend of mine asked me to keep you in my prayers. He gave me your Hebrew name, (your very long Hebrew name), and told me the story of your life. On that day I joined the ranks of Haley’s Virtual Cheerleaders and have been cheering you on and on, ever since. I have learned a thousand lessons from reading about your life and the lives of the people that you have touched. I’ve learned what it really means to be a hero. It means getting up and facing the day with a twinkle in your eye, or humor in your blog, no matter what you are about to face. It means being honest about your fears, looking them in the eye, and going to battle with them. It means learning to change bandages, or dressing up like Cinderella, or heading to work, or giggling, when hiding away is so much easier. I’ve learned that a little bit of dancing goes a long long way. I’ve learned that communities can be built in hospitals, on the internet, even standing waiting for a stranger to buy you a cup of coffee, and I’ve learned that little girls with big smiles and even bigger hearts are extra good at building them. Most importantly, I’ve learned that it is possible for your soul to be touched by someone you may never meet. I know your life will be filled with dripping ice cream cones and skinned knees and knotty hair and sloppy kisses and high flying swings and Anna dancing and all the happiness and sunshine that you deserve.
June 29th, 2007 | #
Tansy, what a treat to see sweet, funny Anna today. She is a gem. It’s so nice to have you back and see you in person. Looking forward to lots more time together, including breakfast without the toddlers where we can finish a sentence! Hope you all have a good, restful night. love, Dana
June 30th, 2007 | #