Beautiful girl, beautiful place

Today we took our first born and dropped her off at college. Normally, I think I would be fine with it, but this is slightly different since she just had surgery two days ago. Am I just fooling myself? I think I'm doing pretty well considering...only a few tears shed and only after we left her. Sara, my next one said, "You better cry when I go to college!"  I will Sara, I will.

This is the view from the common area in her dorm building!

Take 2

Jessie's bone marrow had not recovered enough by last Friday from the last chemo so they could not do the bone marrow biopsy or the lumbar puncture that day. Today we are going to try again. Also they have scheduled the port removal for today so hopefully it will all be done in one shot!
We are waiting to do her labs right now to see if she "qualifies" for 2/3 of the procedures today. Say a prayer that she passes.

12:30pm- port out - now doing bone marrow and LP.
4pm- all successful and coming home.

Independence Day@!!!! Almost.... Blood shortage

We were told earlier today that Jessie would be discharged today, but since her hemoglobin has been running in the 7 range they wanted to give her a transfusionn first before she goes home.
Seems kind of weird, I know. Now the nurse just told us that the blood bank says there will be a delay in the transfusion. It has been on order since noon today, but Jessie is O- and rH- and needs certain antigens in the blood. The nurse said that the blood bank is calling around to local places to try to find the right blood for her. They said it might be very late tonight by the time she is finished getting it so she might have to stay one more night. Hang in there Jessie. Just a little bit longer.....

Mixed Emotions and more GREAT NEWS!

The past week has been relatively quiet. Nausea is getting less and less. Interestingly, her ANC has not fallen very far this time as in the past. Today her ANC was 1640. With this number, she should be home. I asked the doctor today if it stays up, when can we expect to get her home? He said we need to see how she does later this week. He thinks it still might fall some more.
Jess was put on a dairy free diet today. For some reason, her phosphorus is too high. I don't know the cellular reasoning behind it yet, but I did ask. They are watching all aspects closely.
My feelings were hurt a few days ago when she told me that she needed some space. She didn't want me to come every day anymore. I do realize that this is a good thing. It just didn't feel so good then :-). I know that it means she is feeling better, taking charge of her own medical care, growing up, taking responsibility, etc... but when your child is sick, a mother wants to be there. I think she is preparing me for the end of August when she leaves for college. It won't be as hard if I'm not seeing her everyday. At least, that's my theory!!

GREAT NEWS- the bone marrow biopsy came back from the last check done on July 27 again negative for any leukemia cells! The doctor mentioned it in passing (and frankly I wasn't sure what test he was talking about because he used acronyms). It wasn't until later in the day that I figured it out. He said it came back negative which was expected after the last negative, but it was good to have it on file.

When Jessie does get out after this inpatient stay, she will have to return once a month for blood work and then every three months for bone marrow biopsies. These are outpatient procedures so hopefully NO MORE LONG HOSPITAL STAYS!! This will continue for 4 years. Yes, I said FOUR years. Dr. Schore said that this type of cancer rarely comes back, but if it does we want to catch it early with the bone marrow biopsy. I told the doctor that he will follow Jessie all the way through her college career!! Wow. It's a good thing St. Mary's allows freshman to have cars!
Looks like I'll have my life back after this seven month nightmare. Thanks to all the people who made life a little easier during this trial. Special thanks to Dr. Reuven Schore, Melissa Wills and all the nurses on the 4th floor at Children's.

Medical MJ??

Well, tonight is the last night that a bag of chemo will ever run through Jessie's veins. Hallelujah. After tonight, hopefully the days will only get better as far as side effects from the chemo. Last few days have been a little tough with the nausea/vomiting, but Jessie is hanging in there. She is looking forward to college and has that thought to hang on to. We applied for her to have an air conditioner in her room which she just received a call about this afternoon. She got it and was very happy to know that she won't be sweltering the first few weeks at school in a non-air conditioned dorm.  The person in charge also said that she could have a single room if she wanted. She declined saying that she wanted the full college experience.
Jess does have times where she manages to keep food down. She just polished off a bowl of fruit which was in the refrig from last night. She has to eat while she's feel good because it changes so quickly. I hope it stays down. She is on a "wave" of anti-nausea meds right now, benedryl, ativan and zofran. A friend suggested medical MJ if all else fails! I'm beginning to think that might be a good idea!!

New Record Set

Jessie told me with as much enthusiasm as she could muster when I walked in the door today that she broke her record for number of times throwing up in one day. The new record is now 8.
The art therapist came in to ask her if she wanted to do some art and had a nice conversation with her. Jessie sat up for a few minutes to engage in conversation. Calmly and nonchalantly she reached over for a green bag and took one off the top of the stack. The green bag is kind of like a dog poop bag, but they have a hard rim around the top that you put your mouth into when vomiting. After a talk about Kermit the Frog and feeling green, she quietly said she was going to lie back down again.
She seems fairly quiet and peaceful now just surfing the web. I hope she has a quiet night.

Squeezing out the last drops of summer

Here we are again. Jessie had a bone marrow biopsy and an LP with chemo inserted into cerebral spinal fluid. They are going to hang her bag of chemo soon.
Her back is sore from the LP. So far no headache to speak of. (Remember last time she had a terrible headache for about 12 days or so. ) Just waiting and resting.
This time we don't have quite as nice a view, but can't complain because last time was sooooo good. She really enjoyed the fireworks.
Jess had a great time yesterday at her college orientation. An hour after we got home last night she had 10-12 friends over at the house for a few hours. She is squeezing every bit of summer fun out while she has time to enjoy!! You go girl!