Wednesday, January 20, 2010

Emery--Wednesday Update

Hi all,

Sorry for the delay in this update. The past two days have been a little hectic. We have still not met with the oncology team about the results of the MRI and other tests. They came by earlier but David was in the shower and Dr. Thompson said he couldn't visit with us without David! These guys love to give each other a hard time. Anyway, we thought they'd be right back but that was hours ago and they are off on their rounds elsewhere. We are hoping they will be back soon and fill us in with more details. The neurosurgeon stopped in last night and told us that the good news is that the tumor has not grown. We were hoping for really exciting news that it had diminished quite a bit in size, but he felt that it had not changed. However, he said it was stable and that we should "be encouraged, not discouraged." I have to admit that we all felt discouraged in spite of his desire to put a positive spin on the results. This morning one of the residents told Bonnie and David that the radiologist had measured the tumor size and compared it to the previous MRI, reporting that it actually HAD diminished a bit. So that made us a lot happier. As I said, though, we are still waiting for the big boys to come back and fill us in.

Emery also gained a little bit of weight and seems to be doing better with feeding. We are giving her bottles of breast milk with a little bit of fortified formula mixed in, along with her regular nursing time. Bless Bonnie's heart, she spends a good deal of time nursing or pumping for bottles. She is a trooper, just like her baby girl. Bonnie and David have been just amazing and I am so proud of both of them.

The dietitian for the cancer service also stopped in to talk with Bonnie about the feeding issues and was reassuring about different steps they can take to improve Emery's intake. We've had a couple of visitors and Bonnie is actually out with her friend Lauren for a brief respite right now. I'm glad she's having a small break from the hospital. David has fed and held Emery and I am doing some laundry and running little hospital errands.

I am going to close by including part of an email that David sent to Amarillo High last night. Some of you have already seen it but I thought everyone else might like to read something from Emery's Daddy's point of view. Here's David:

We have been in Houston now for 10 days. Here in Houston, Emery has been through three rounds of anesthesia, 2 MRIs, 1 surgery, 2 bone biopsies, 2 bone scans, 4 EKGs, over 20 x-rays, over 70 blood pressure-readings, at least 20 needle-stabs, 3 days of chemotherapy, 6 rounds of GCSF, 3 bags of blood, countless bags of fluid, 8 rounds of morphine, 8 rounds of 2 different nausea-drugs, 7 tubes of sensi-cream, probably at least 100 blankets, and one knawed-down passy. She has had as many as 14 lines coming off of her, fevers, half-days of no food, the worst diaper-rash some of the staff here has seen, awful constipation, and annoying parents. She is one tough cookie. Momma and Daddy are trying to be tough stuff, but we have had a few rough patches. We had to go three days without holding her or nursing her during the period that she went into surgery. They had to get a good biopsy, which was actually pretty complicated because of the tumor's poor real estate. Those days were really hard on us, but a little harder on Momma who couldn't nurse. It is pretty tough to see her hurt. Every parent knows how hard that is. Today was a pretty big day, because they did another MRI to try to measure the progress of the chemotherapy. We were able to talk to the Neurosurgeon team a few hours ago, but haven't gotten to talk to the oncologist team yet. Mixed emotions. According to the neurosurgeons, the tumor has stopped growing, but hasn't shrunk yet in the spinal canal. It is really good that the tumor has stopped growing, especially when one considers the size of the tumor. Based on the size, it is reasonable to assume that the cancer was aggressive, thus the fact that it appears to have stopped translates to tangible progress. Bonnie and I were really hoping for a big decrease in the size of the tumor, so it was actually a pretty tough blow to us hearing that is was still such a presence in her spinal column. We also know that the news could have been much, much worse. The general idea that the neurosurgeons conveyed is that it wasn’t all they were hoping for, but better than it could have been. They also said that each tumor is different-genetically. Some take more work, and that might be what we are looking at. I hate to ask any more of you all, but I really want to ask you all to keep praying if you can. Emery sure does need prayer. The specific things, besides the fact that we want all cancer out of little Emery, are the location of the tumor in her spinal canal and her weight/nutrition. Getting her to eat has been a battle because of all the different things going on with the chemo. The doctors aren't comfortable with her nutrition levels or her weight-gain, and neither are we. We really appreciate the prayers. I want to thank you all again. Bonnie and I have been blessed so much by all of you.

5 comments:

Suzassippi said...

I just want to say that reading this makes all things in my life pale in comparison, and I love you and your children for who you have been in my life. I am praying praying praying.

unalaska said...

Oh, Jane. Here I have been hanging on every little word you put on facebook. I don't know why I didn't think of your blog...guess I have been overwhelmed by holidays. David's perspective is mind boggling. The heartache of parenthood is blatantly apparent and I so hurt for them. Prayers and candles are continuing.

Betty said...

Such a heart-breaking time. I love you all and send my good vibes and heartfelt prayers.

Bubbe said...

No words can convey the feelings brought up by David's letter. To think that this little baby would have to go through so much so soon in her life is nothing short of wrenching. The whole world is praying along with you. Love you all so much.

Gigi said...

Thanks to all of you for your love, support and prayers. We love you lots! Friends and family have certainly helped us to get through this difficult time. We continue to be very positive and optimistic every day.