Day -6

Gracie had a long night with drinking and peeing because she didn't have her DDAVP. the nurses come in every hour and each time she had wet through the diaper on the bed. They made layers of pads on the bed so they could just take off the top layer and not have to change all the sheets each time. She drank a ton all night and didn't get much rest. Same thing today. This morning her blood glucose was 294( normal is 60-115) and her sodium was 147( normal is 135-145) They tested a few hours later and her sodium was 157 and glucose was 444! They said it is from the steroid she had yesterday called dexamethasone. It is five times more powerful than prednisone. She is supposed to take it the first three days but they decided to not give it today and see if it helped. The next time they tested her blood was at 5:00 and her blood sugar was down to 206 and sodium was up to 159. They decided that she was still peeing out too much even with all the iv fluids and her drinks. So they just gave her a quarter dose of ddavp to help. We will see how it goes and what the numbers do. They will also check her blood sugar through the night and if it is still over 200, she needs some insulin. They said this isn't uncommon with this steroid and the high glucose will go away soon. Only some people have lasting diabetes from it. I'm hoping it will go away but I was getting nervous this morning when they first told me, since my little brother has had diabetes since age 6.
She has had a lot of vomiting today as well. She is in pretty good spirits today though and we made a little craft hand puppet. She is pretty tired and hopefully she will get better sleep tonight now that she has had the ddavp.
I have been impressed. With the nurses we have had so far so I am happy about that!! :)
26 hours down and 70 to go!

Day -7

Brandon stayed the night with Gracie and I stayed at the RMD house because only one parent is allowed to stay the night. She had a pretty good night and no puking so that is good. I woke up this morning anxious and thought" am I really ready for what is to come?"
I know we can only go forward, this is what we have been waiting for to rid her body of any lingering cancer cells.
This morning Jim and Paul from hug works stopped by the room to sing to gracie. She loved it. Hugworks is a nonprofit organization that provides music programs and recorded resources for children with special medical and emotional needs. It definitely lightened the mood and brought a smile. They have been doing this for 29 years. Go to http://www.hugworks.org

A Brief History of Hugworks ®

Jim Newton was the founding staff member in 1981 and began what was originally named Celebration Shop, a 501(c)(3) not-for-profit. Celebration Shop supported tours to churches, schools and colleges, providing programs for youth and young adults. In early 1983, while on tour in Ohio, Jim was invited to sing with children at Columbus Children’s Hospital. He had never used his singing voice and guitar in the hospital. His experience that day put both him and Celebration Shop on a new life course, as Jim’s own personal words tell you here:

"I felt really awkward and inadequate to be singing with hospitalized children, never having done so before. And though the lobby setting with about 20 children gathered - some in wheelchairs or on crutches, some coming under their own power, and a couple in hospital beds - went okay, I really felt my repertoire fell far short of what the children really needed.
Just as I was putting my guitar away, a nurse asked me if I would go to a room to sing for a little four year old boy (we’ll call him Toby - for purposes of family privacy) who was too ill to come out with the other kids. I agreed and she escorted me to his door. When she introduced me to this precious child and his Mom, she said, ‘This is Jim, he sings and plays guitar, and he’s going to make you feel better.’ Talk about feeling awkward and inadequate! Here I was with a very few, if any, real children’s songs - singing with a very ill little boy and a Mom worn out from countless days and nights of her hospital vigil - and I’m supposed to make them feel better!?!
As the nurse disappeared out the door, I started to play and sing. I don’t remember exactly what song I did, and after the song was finished we just looked at each other in a tense silence - no claps, no smiles, no words. So, not knowing how to gracefully excuse myself, I began another song. In just a minute or so, I noticed that Toby was on the verge of a smile - just a hint around the corners of his mouth. And so I immediately started another song. Almost instantly, Toby broke into a beautiful grin and began to clap his hands together, totally out of rhythm but absolutely and perfectly wonderful! His Mom looked around at him in amazement and began to quietly cry - huge teardrops streaming down her face. That’s all it took for me! I began to cry too, but I kept playing and singing - and Toby kept smiling and clapping!!
I visited with them for a few minutes, and when I had to go, Toby’s Mom walked me to the door. She said, ‘I don’t believe we’ll take Toby home from the hospital this time. I think we’re going to lose him. But you gave us so much today. He hasn’t smiled like that in weeks, and he’s never clapped his hands to music that way! Thank you so very much!!’
As I walked down the hall, something inside told me this was where I belonged. Music and singing had always been so healing for me. Perhaps I could pass it on to children and families who needed songs of the heart.”


Gracie has been very grouchy today but has been eating pretty well and only puked once today. Every time she is sad or grouchy I ask her if she is hurting but she just says " I'm just mad/sad that daddy went home, that's all" finally when her pain is too much she will admit she needs something for it. I don't know why she won't admit it or ask for pain medicine. She knows it makes her feel better. I don't know if it makes her feel funny or something.
They were going to start chemo at 1 today but her urine specific gravity was too high because she had had the DDAVP this morning. So it took till about 4 pm for it to come down to where they wanted it. They are going to try to go without any DDAVP these 4 days so her kidneys aren't holding onto all the chemo. I think that is an ok idea as long as she doesn't get terribly thirsty. We will see how it goes. She has only been needing it once a day lately anyway. They started the chemo at 5 and it runs for 96 straight hours around the clock. Wow! When I think of how awfully sick she was on 3-5 hours a day chemo, it is hard to imagine how much worse this will be at 24 hours a day. The dose is much higher also, I hate watching this poison enter her little body drip by drip. But I am glad there is such a thing. I can't exactly hate it if it is helping her. It is a fine line.

$12 Challenge/Cook book fundraiser

Keri here with another challenge...a $12 challenge this time. It's been exactly 6 months since the $10 challenge so it must be time for another! Brandon's cousin MaryJo put together a family cookbook in Gracie's behalf. It contains favorite recipes of many family and friends of Gracie's. So here' the challenge Donate $12 to Gracie's fund through the paypal link above and we'll send you one of the cookbooks. Killer deal right? $10 from each cook book goes towards gracie's care (2$ for shipping). Make sure the address you put on the paypal donation is the address you want the cookbook mailed to and please make a note of "cookbook" so we know you want one. There are 200 cookbooks to sell! Who's up for the challenge???? On your mark, get set, GO!

Address at Cook Children's

Gracie Bloxham
C/O Cook Children's Medical Center
801 7th Ave
Fort Worth, TX 76104

Day -8

This morning Gracie had surgery to place a double lumen central line. She did really well with it and after that she had an EGD to scope her throat and esophagus to see why she keeps throwing up everything. They found that she had a severe esophageal stricture. Toward the bottom the opening was so small, a pen couldn't even pass through. This is why she would puke up bite by bite, it couldn't go down to her stomach. She has been so hungry this week and wanting to eat and it has been so frustrating for her. The doc did a balloon dilation to widen the opening and she was a lot better after that. She had a barium swallow done to make sure everything was good and it is, she ate two bowls of cereal and some applesauce. We are now in her BMTU room that she will be in for the next month or longer. Today is called day -8. Transplant is considered day 0 so right now we are counting down. Tomorrow she starts her Intense chemo and it will run for 4 days around the clock. she has to have a daily bath and physical therapy, she also has mouth care 4 times a day, she just had the first mouth care and she wasn't too happy about it but of course she did it and held still like always. The nurse was so impressed cause they have to hold kids down all the time. They were so impressed with her during the barium swallow as well. She just amazes everyone. she is in pretty good spirits so far but I can also see a lot of anxiety. She is so smart and doesn't miss a thing. I also try to explain everything that is going on so there are no surprises. today is daddy's birthday and he will stay the night with her tonight and leave tomorrow afternoon to head home for work. It has been so great to have him here with us. He will come back next weekend.
The unit here is pretty nice and they bring a food tray for the parent when they bring her tray as well. She is on a low bacteria diet and has to eat her food within 30 minutes from the time they bring it. Her food is made fresh when it is ordered so she isn't allowed to eat off the parent tray cause it might not be as fresh. :) we have already watched sleeping beauty, tinker bell, monsters Inc and my little pony and she did some puzzles.

Here we go

Gracie's chest XRay was clear on Monday! Thanks for all the prayers. They said it actually looked better than the chest XRay that was taken on Thursday after the chest tube. All of her other tests came back okay too and so insurance has approved her and her doctors have cleared her for transplant. She goes in tomorrow. She will have surgery in the morning to put in a central line and also they will scoper her throat to see what the problem is there. After that she will start Myeloablative chemo to completely destroy her bone marrow. This will go for 4 days. After that she waits 3 days to give the chemo time to get through her system. They don't want the chemo still working or it would kill the new stem cells. So they wait a few days to give it time to leave her system. After the 3 days she will receive her own stem cells that were harvested months ago. Then it's a waiting game. It takes 7-21 days for the stem cells to engraft and show they are making new blood. During all this time she will have no immune system at all. She will be in the BMTU (bone marrow transplant unit) which is isolation with strict hygeine and cleanliness precautions. She will have to have blood and platelet transfusions and will get infections and mouth sores. They said the mouth sores are so bad their mouth looks like raw hamburger meat and even explaining it that way doesn't prepare you for how bad it really is. She is at risk for organ failure and infections of all kinds. I know it is going to be bad from what I've heard from other parents but even those who have gone through it with their own children say that you can't describe it in words. So the thoughts keep coming into my mind,is this really worth it??? But the benefits far outweigh the risks and anything to help our baby girl live and be healthy is what we will do. We have no other option. I will beposting almost every day. I'm sure it's not going to be the greatest news but it is more of a journal to keep track of things while I am in there with her.I miss my other kids so much already and it has only been 4 days. I just bawled kissing my baby Von goodbye. He changes so much every day. Please continue to remember our family in your prayers but especially sweet Gracie girl. Xoxo Lisa

World's Toughest Kid

Granpa and Grandma Bloxham came for a visit and brought Gracie a trophy that says "World's Toughest Kid" Gracie Bloxham. She LOVES it! What a sweet idea! She likes to tell everyone about it. She is so so strong and courageous!

G is for Gracie! She loves practicing her writing and doing her "school"

This was Sept &th. check out all that new hair! it is growing in quite dark this time. We were at the store and there was a lady that said "I like your pixie haircut. so cute" I think she was totally serious. :) lol.

anyway, the second week of chemo went ok. She was still puking a couple times a day except for the few days she was on emend. Last weekend we went down to the great wolf lodge with the whole family and grandma and grandpa. It was a lot of fun. We were only 40 minutes from ft worth for our appt on tuesday so Gracie and I drove over early tuesday morning while the others checked out and drove back home. Tuesday she had her echo and /ekg and then a clinic visit for labs. The doc was so happy to see how good she looked and that she was smiling and walking and talking. Wednesday she had a CT scan that showed more fluid on the left side, so they scheduled for a thoracentesis/chest tube for the following day since she was going to be sedated anyway for the Bone marrow biopsies.

Thursday she had an MIBG scan and then the other things. The surgeon said it wasnt the same clear fluid as last time, it was milky white and that means it was coming from something else. they call it chylothorax. basically the white fluid was fat leaking from the lymphatic system. now we have to change her diet to low/no fat and they gave us a new formula.

We go back down next week and they will do a chest x ray monday. If there is no new fluid then we can proceed with our original plans of stem cell transplant. if there is new fluid, we will have to manage this another way with drugs/more surgery and do another round of chemo before transplant. We are hoping and praying for no more fluid on mondays x ray.

any prayers are always appreciated. :)


google chylothorax