Last night we went to the Miracle Marathon, an event that raises money for the MCG Children's Medical Center. They had a jumping tent, face painting, live music, and a hypnotist. And lots of food and candy... Mollie had a blast. She met a couple of other girls her age and they even got up on stage with the hypnotist!
Unfortunately, our friend Gage went to the ER with fever yesterday. His family lives 4 hours from the hospital! I may make a trip down there to drop off some candy and magazines (and a good cup of coffee) today.
Have a good weekend!
3.27.2009
3.26.2009
A different kind of zoo
A few hours after posting Tuesday night, I was getting ready for bed when Mollie came downstairs burning up with a temperature of 104°! After taking her temp several times with different thermometers, we decided we better page the on call oncologist and head to the hospital. Unfortunately, it was after midnight and the pediatric ER was closed so we had to go to the adult side.
The ER attending was Dr. Lyons, the same doctor who treated me just before Mollie was diagnosed. He was great- very gentle with Mollie and good at communicating what the plan was. So the plan was to draw labs to measure Mollie's blood counts and do a blood culture; if her counts were good (not neutropenic), she would get IV antibiotics and go home. If not, she would be admitted. That was the good part of the night.
The bad part is that in the adult ER, nobody knows how to access ports! It was a long time before anyone came in to draw blood (I imagine them all standing around in the hallway saying, "I'm not gonna do it. I don't know how to do it."). They kept asking questions about what kind of needle, etc. So, I was worried, but the nurse that finally came in to do it was very kind to Mollie and seemed confident. But, she had no idea what she was doing and she stuck Mollie 3 times before I asked her to stop and get someone else. Finally another nurse came in and successfully accessed Mollie's port- but she was not the most gentle and understanding person and kept telling Mollie that it didn't hurt because she had the lidocaine cream on. Um, yeah, it didn't hurt the nurse. On one of the message boards I read, a parent suggested that every time a nurse tells a child that it's not going to hurt and it does, the child should get to stick the nurse with a needle!!
Anyway, once she was accessed, they drew blood and it was just time sitting around waiting for the results. Mollie slept and I sat in a hard plastic chair. Finally, around 5 am, the counts came back. The neutrophils were on the high side, an indicator of infection, and they gave her the IV antibiotics and we were on our merry way just before 7 am.
I slept for about 3 hours before we had to turn around and go in to clinic for follow up. The blood cultures were negative, but they wanted to access her again to repeat the labs. When nurse Pam accessed Mollie's port in the clinic, she said, "I know they hurt you over there in the ER, so I'm going to be extra gentle." Mollie didn't even bat an eyelash when the needle went in. I so wish we could just drop by Pam's house on our way to the ER!! They were still concerned about infection because the differential showed elevated banded neutrophils, so she got more IV antibiotics and then we were ready to go home. Matt had left earlier to take Lucy home for a nap and unfortunately, my keys, wallet, and cell phone were in the diaper bag. This is what happens when you get no sleep and spend the entire night in a hard plastic lawn chair! We finally got in touch with him and he turned around to bring me my keys and we had a lovely drive-thru dinner at McDonald's before going home. That gave me about 30 minutes to change my clothes before I headed out to teach my Weds. night class!
So, we didn't make it to the zoo (unless you count the ER), but we will go during spring break instead. Next Tues., Mollie is scheduled for a spinal tap/chemo. Beth, Mollie's NP, said her counts may drop after this infection; they will go ahead with the spinal and IV chemo even if her counts are low, but they will hold or reduce the oral chemo if her counts are below 750. So... we'll see what happens. Thanks for all the well wishes and for helping us keep the present box full of goodies for Mollie to pick out after she undergoes any kind of medical treatment/procedure.
The ER attending was Dr. Lyons, the same doctor who treated me just before Mollie was diagnosed. He was great- very gentle with Mollie and good at communicating what the plan was. So the plan was to draw labs to measure Mollie's blood counts and do a blood culture; if her counts were good (not neutropenic), she would get IV antibiotics and go home. If not, she would be admitted. That was the good part of the night.
The bad part is that in the adult ER, nobody knows how to access ports! It was a long time before anyone came in to draw blood (I imagine them all standing around in the hallway saying, "I'm not gonna do it. I don't know how to do it."). They kept asking questions about what kind of needle, etc. So, I was worried, but the nurse that finally came in to do it was very kind to Mollie and seemed confident. But, she had no idea what she was doing and she stuck Mollie 3 times before I asked her to stop and get someone else. Finally another nurse came in and successfully accessed Mollie's port- but she was not the most gentle and understanding person and kept telling Mollie that it didn't hurt because she had the lidocaine cream on. Um, yeah, it didn't hurt the nurse. On one of the message boards I read, a parent suggested that every time a nurse tells a child that it's not going to hurt and it does, the child should get to stick the nurse with a needle!!
Anyway, once she was accessed, they drew blood and it was just time sitting around waiting for the results. Mollie slept and I sat in a hard plastic chair. Finally, around 5 am, the counts came back. The neutrophils were on the high side, an indicator of infection, and they gave her the IV antibiotics and we were on our merry way just before 7 am.
I slept for about 3 hours before we had to turn around and go in to clinic for follow up. The blood cultures were negative, but they wanted to access her again to repeat the labs. When nurse Pam accessed Mollie's port in the clinic, she said, "I know they hurt you over there in the ER, so I'm going to be extra gentle." Mollie didn't even bat an eyelash when the needle went in. I so wish we could just drop by Pam's house on our way to the ER!! They were still concerned about infection because the differential showed elevated banded neutrophils, so she got more IV antibiotics and then we were ready to go home. Matt had left earlier to take Lucy home for a nap and unfortunately, my keys, wallet, and cell phone were in the diaper bag. This is what happens when you get no sleep and spend the entire night in a hard plastic lawn chair! We finally got in touch with him and he turned around to bring me my keys and we had a lovely drive-thru dinner at McDonald's before going home. That gave me about 30 minutes to change my clothes before I headed out to teach my Weds. night class!
So, we didn't make it to the zoo (unless you count the ER), but we will go during spring break instead. Next Tues., Mollie is scheduled for a spinal tap/chemo. Beth, Mollie's NP, said her counts may drop after this infection; they will go ahead with the spinal and IV chemo even if her counts are low, but they will hold or reduce the oral chemo if her counts are below 750. So... we'll see what happens. Thanks for all the well wishes and for helping us keep the present box full of goodies for Mollie to pick out after she undergoes any kind of medical treatment/procedure.
3.24.2009
Zoo bound
Mollie doesn't have school tomorrow, so we are heading to the zoo. My goal is to make her walk a lot... I am concerned about her stamina and gait so we are making an effort to do more aerobic activities. Now, if only I could get her to wear running/athletic shoes instead of "cute" shoes I think we could make some progress.
Here are a few pictures from last weekend:
First, Mollie in her gardening attire-
Mollie with our friends' new baby, Graham-
Here are a few pictures from last weekend:
First, Mollie in her gardening attire-
Mollie with our friends' new baby, Graham-
3.20.2009
Week in Review
Thank goodness for "normal". Mollie has had a healthy, normal week. The weather as been lovely (except for a thick coating of pollen everywhere), so we have been going outside to practice throwing, catching, and hitting a baseball. Being sick and weakened for so long has definitely affected Mollie's endurance- she was winded just from walking around the block. But we're working on it.
Mollie made the Beeper this week (http://www.mcg.edu/news/beeper/) and she's enjoying her little bit of celebrity. She is definitely hitting her stride at school and looks forward to it every day. We are also trying to learn German. Mollie has a good memory for vocabulary, but it's difficult to try to teach sentences.
Mollie has been enjoying her birthday gifts...it's been an "extended" birthday, with something special arriving in the mail each day since the beginning of March. No wonder her new favorite activity is checking the mailbox!! In the photo, Mollie is with her doll, Kirsten. They are wearing matching German dirndls- the one Mollie has on was mine, brought by my grandpa from Germany when I was little, and the one on the doll was handmade by my great aunt Nancy. She has made a whole wardrobe for Mollie's doll!
Our friends Pam and Brandon had a baby boy on St. Patrick's day and Mollie wants to see him, so that's probably what we're up to this weekend.
3.19.2009
A Letter from Frank (re: St. Baldrick's)
For the past five (5) years, I've asked your assistance for Kids with Cancer and you have responded with incredible generosity - $25,000. Despite the financial difficulties we face today you again donated over $5,000 for these wonderful children - this one was for you Mollie.
You are all so very kind, loving, generous and wonderful. You're "Beeee-ooo-ti-ful" and I'm Bald.
I can't thank you enough for your continued support of these children. St. Baldricks has raised over $8 million dollars to date but we have a long way to go. If you haven't had an opportunity to donate, please don't hesitate to do so. Simply click on the link. It will take only a few minutes and a few dollars.
http://www.stbaldricks.org/participants/shavee_info.php?ParticipantKey=2009-330005#
I love you all and sincerely appreciate all those you were able to contribute to making this year's event a phenomenal success for Mollie.
Peace be with you now and always.
Frank "Cookie" Mannino
3.17.2009
Wearing o' the green
Mollie loves any holiday that requires special wardrobe. Here she is all ready for school.
Happy St. Patrick's Day!
3.15.2009
Party Time!
We had Mollie's birthday party yesterday at a local pizza joint. Mollie doesn't like pizza, but she wanted to go there. They have a game room, like a miniature Chuck-E-Cheese, where you win tickets and get prizes. It was her best birthday party yet! Matt had this to say,
"I am so proud of Mollie - we explained to her that it would be easier for her friends to attend the party if we asked them not to bring presents - at first she did not like the idea, but eventually warmed to it. Of course, all the kids had a great time, and there were a few that did come that I suspect would not have if we had not explicitly asked everyone not to bring gifts. Mollie learned a great lesson along the way, that the enjoyment of being with her friends was the most important aspect, not what presents she might get. I know she felt special and thoroughly enjoyed herself."
No having gifts didn't detract from the festivities AT ALL.
This week is starting off well for Mollie- we've been giving her Zofran to cut down on the nausea and it is working like a charm!
"I am so proud of Mollie - we explained to her that it would be easier for her friends to attend the party if we asked them not to bring presents - at first she did not like the idea, but eventually warmed to it. Of course, all the kids had a great time, and there were a few that did come that I suspect would not have if we had not explicitly asked everyone not to bring gifts. Mollie learned a great lesson along the way, that the enjoyment of being with her friends was the most important aspect, not what presents she might get. I know she felt special and thoroughly enjoyed herself."
No having gifts didn't detract from the festivities AT ALL.
This week is starting off well for Mollie- we've been giving her Zofran to cut down on the nausea and it is working like a charm!
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