More Blood

Monday, Grace needed a blood transfusion. We were able to do it at the doctor's office!! It took the better part of the day but we were able to come home again!!

Her next round doesn't start until Sunday. She has another office visit tomorrow, hopefully all will go well and we'll get to stay at home the whole week--that would be amazing.

Our nephew is getting baptized this Saturday and Grace really wants to see her cousins, hangout and just feel normal. She misses gymnastics and we were watching the women's team last night and Grace said, "When I'm in the Olympics, I hope I have my hair again, it'd be weird if I was bald and the other girls had ponytails!" We told her she'd have her hair by then!! After that she wanted to know if we'd let her wear make-up if she was in the Olympics--we said yes--but that hers would look good, not so crazy!! What is up with gymnasts and their complete lack of make-up common sense??

Anyway, this has been the best week since all this craziness started. Hopefully, it'll continue to get better and better.

At Home and Loving it!!

We are at home and loving it. Grace is doing well and eating more than she was at the hospital. Her skin is getting mottled and is peeling. The mouth sore shouldn't really be a problem this round (cross your fingers). We are hoping to be able to keep her home until next weekend!! Monday she has a clinic visit and blood transfusion scheduled.

Every time Rod or I walk through the door Jessica and Jane are there in an instant hugging and kissing us and holding hands--then they just follow us around and keep saying, "we miss you so much!!" We've been rearranging schedules etc. to be able to spend more time with them. There's a great organization called 'Super Sibs' that is dedicated to helping the siblings of cancer kids--it also has a guide to help us know how to make them feel loved and special. So many people helping families get through these heart wrenching experiences--it still amazes us--the cable guy was over here yesterday looking at our connection and he just kept saying, "I have 4 kids, it breaks my heart." Complete strangers offer to pray for us or put us on their churches prayer roll. We are so grateful for good people, family and friends.

3rd round of chemo

Gracie started her 3rd round of chemo yesterday. We came home Thursday evening and had to be back to the hospital at 2 o'clock Friday. Grace was not happy. She knew we needed to go back to the hospital but she thought we would be able to come home that same day--sort of an outpatient thing. When she realized that we were staying for a week she just began crying, all energy gone, she just sagged. She's tired of it. I have to admit, every time we bring her home I have this overwhelming desire to throw her in the car and head for Mexico or Europe or somewhere and just make it all go away. As if sandy beaches would cure her. I feel like if we pretend it's not happening it'll stop and we can go back, she'd be smiley, bouncy Grace again, and we could forget all about this nightmare we can't seem to wake up from. But she still has cancer and needs more treatment. I can hardly stand it and yet, it must be so much worse for her.

None of us would be able to cope at all if it weren't for all the love and support we've received. I don't know how to express forcefully enough, or just enough, enough how much we appreciate all that you are doing for us.

Thanks--thanks--thanks!!!!

Blood and Fever

Late last night Gracie's fever went to 102 and after consulting the doctor were sent straight to the hospital where we found that her Hemoglobin and Red Blood Cell counts were dangerously low. She got her 2nd blood transfusion along with platelets too. Her fever continues to go up and down according to her Tylenol doses. Her electrolytes were off from dehydration--she wasn't taking in enough fluids the last couple of days. This afternoon we found that her White Blood Cell count is beginning its rise so we are hopeful that her fever will break and her mouth sores will heal quickly. She is on morphine again but she is comfortable and sleeping better than the last few days. It looks like her White Blood Cell count will be high enough by Wednesday and she'll start her next round of chemo on Thursday or Friday.

Have a goodnight--We'll update as soon as we can.

Some Rough Water

The last few days have been a little rough. Grace did get some swelling and mouth sores--but her temperature hovered between 99.3 & 100.9--thankfully, it never reached 101.5 (that's the cut-off for her to be hospitalized)!! We've been able to semi-control the pain with a Tylenol/hydrocodone mixture! She'd be pretty good and comfortable for an hour to 2 hours, but by 2 1/2 hours she was uncomfortable and by 4 hours when her next dose was due she's been beside herself. And then the cycle starts again. This is how she was last time when her mouth was beginning to heal--her mouth is already beginning to slough off--it's painful and she's really tired, but it's been drastically better than last time. We've been able to be at home and sleep a tiny bit better--even interrupted sleep in your own bed is better than at the hospital. It's really hard to see her in pain. She just keeps doing her best, she gets frustrated easily when we don't understand what it is she wants or needs. But she has all her blanket's and stuffed animals and cards around that help her feel better. Sometimes when we walk into the room she'll just be looking at the posters we've made out of all the cards and well wishes she has received. She'll reach out and touch it card or picture. It helps calm her down and she's able to rest.

We appreciate all the support, help, love and prayers we continue to receive.

Home

We are home. It's so nice to be home--it's so much more relaxing than at the hospital. Her 2nd round went well. She's a little weaker this time. However that medication for her mouth sores (Kepivance) is working well. It's kind of holding them at bay, so she doesn't have a full blown attack!!! Hopefully, we'll get to forgo the morphine haze!! We just found out today that her next round won't start until day 21 of this cycle and we are on day 7 right now. We really hope we can keep her fever free. Because there's no place like home.

2nd Round

Well, thankfully her mouths sores are on the mend--her white blood cell count came way up--YEAH!!! But it also means that it's time to start her 2nd round of chemo.

We were admitted to the hospital on June 15th--one month later we have been at home only 3 days (including today). Tomorrow it's back to the hospital for a week. The chemo she gets this week is exactly the same as the last round. Gracie's doctor gave her a medication that is approved for bone marrow transplant patients that helps with the mouth sores. The medication is taken 3 days before and after chemo. She will only be able to take it one day before and 3 days after. It's more important to start her next round than to prevent the mouth sores. But the next time we have this chemo scheduled she'll get all 6 days of the medication.

She's doing really well, she gets tired quite quickly but we were able to have a small party for her birthday last night. Lots of Tinkerbell--plates, cups, napkins and even a cake!! Half-way through her party she had to go lay down. I have to say she slept so well last night without anyone checking her vitals or administering medications all night.

Sunday was the first she had smiled since the mouth sores started but yesterday she laughed--it was awesome to see her giggling and smiling.

The unknown of this is difficult. We were thinking we'd have her home for a week or so but it just didn't work out. Hopefully, with the new medication we'll have better luck.

Jessica and Jane came home yesterday!!!! Everyone was happy to be all back together. My mom came also. We are so glad she can help us right now. Jessica and Jane will be able to have some stability.

We shaved Gracie's head--her hair was falling out by the handfuls--afterwards the nurse came in and said--"Wow!! that new haircut really makes your eyes pop!!" I said, "Sinead O'Conner has got nothing on you!!" And the nurse replys, "Gracie, 'nothing compares to you'." ha ha ha
Very funny!! (if you are too young or old--"Nothing Compares to You" was Sinead O'Connor's hit song)

Fever Strikes!!

We went to a doctor's appointment on Tuesday morning. Gracie's red blood cells were too low and she needed a blood transfusion. She began to run a fever that was higher than 101.5 and that's the cut off and she had to be hospitalized. Over the past couple of days her fever has been up and down. The highest it's been is 103.3 and the lowest is 99--she is hanging in there. She's actually in a morphine haze, which I think is good. Hopefully, she won't remember too much of this. She has really bad sores in her mouth--they cover her entire mouth--it's pretty gross!! Her mouth and gums are swollen and we learned that the lesions are in her throat as well. The morphine she is on is for managing the pain from the sores. They think her mouth will start feeling better in a couple of days. She's pretty out of it. She hasn't eaten for 3 days, (Monday afternoon was the last time she ate) she started on IV food this evening.

It's so hard seeing her in so much pain. I'm too tired myself to think of something funny right now. I'm sure I'll come up with something--then I'll add it!!!

Grandpa Cluff came to visit today and brought Grace a bright sombrero from Mexico!! He brought Jessica and Jane one as well. We'll get a picture of all three of them and post it as soon as possible.

We hope this finds you well. We would be remiss if we didn't say thank you for the many care packages, food, friendship and especially your prayers. There's been so many days that the package or food or note or phone call or email was exactly what we needed. There is no way for us to thank all of you enough.

Oooh!!! Gracie's hair has begun to fall out--it's kind of weird and it doesn't hurt for it to fall out so that's a major bonus!!!! It's a bit itchy though. She's pretty sure she's going to be cute bald, we'll have to wait and see.

Have a super evening.

Fund Established for Grace

The Cluff Family has blessed the lives of numerous people through their kindness, service, and caring. They have borne the burdens of many throughout the years. Now, we feel it is our turn to lighten the burden that the Cluff family is now bearing.

How We Can Help
First and foremost, Grace needs our prayers and faith. Nothing can substitute for that.

Another way that we can lighten their load is by lessening the large financial burden that results from the treatment of such diseases. We all understand how expensive the cost of health care can be.

We are asking that you consider donating to assist with Grace's medical costs. In order to simplify the process of making a donation, we have set up a fund in Grace's name at Wells Fargo Bank. We chose Wells Fargo because of the large number of locations that they have throughout Texas and the Western U.S.

The simplest way to donate is to visit a Wells Fargo Bank. Let them know you want to make a contribution to the fund for “Grace Camilla Cluff” (make sure to give them her full name). Checks should be made payable to “Grace Camilla Cluff”. See below on how to find a Bank location near you.

There are numerous other ways to make a donation (i.e. we can send you an envelope and a deposit slip to mail in, you can mail a check made out to “Grace Camilla Cluff” to us and we can deposit it, etc.).

If you have any questions, or would like more information on the other methods of making a donation, please don't hesitate to contact us by sending an email to: enscarfment@netzero.net

Thank you for all your love and support,

Darren and Victoria (Melissa's sister) Carpenter
enscarfment@netzero.net

To locate a Wells Fargo near you:
Go to their website (http://www.wellsfargo.com/) and type in your Zip Code in the area entitled “Find ATMs/Locations” on the left-hand side of the web page.
Call Wells Fargo at 1-800-956-4442, and select “0” to speak with a representative.

Too Soon

I guess we spoke too soon on Thursday night. Friday was the worst so far. She had terrible headaches from the lumbar puncture. The nausea kicked up a notch and she couldn't keep anything down. She is very fatigued. They only allowed Rod to bring her home once all of that stabilized (at least it stabilized). They came home about 8:00pm. We will be able to keep her home as long as she doesn't develop a fever or begin to vomit and other yucky stuff we will spare you the details of. If any of these happen it is right back to the hospital. We want to keep her home so we are forcing the fluids and watching her temperature closely. She is a sick little girl right now. This is the first we have seen her without any good moments in a day. The plus side is she does not speak. How many times have we wished for our kids to be silent????? Silence means "Yes" and a grunt means "No". That's the most we get from her. Oh, yeah we forgot about "Aaaaahhhh" it means there is something she wants and we have to guess until we get silence. Of course she did tell Vicki in the night "I need to go potty" and this morning she told her "I'm hungry". So, we know she hasn't lost the ability to speak. Whew!! That was not a side effect they mentioned.

First Round of Induction Chemo

This week has been stressful watching for signs of side effects to the chemo. There have been a few bumps in the road but thankfully it has gone better than we anticipated. She has done fantastic other than begging to go home every day and not wanting to take any more pills. Last night was the first Rod spent away from the hospital. When he got there from work Grace and I were both in the bed crying. Grace was having chest pains and I couldn't take my baby crying. After the pain medication took affect both of us were better. Rod decided he was more worried about me than Grace and took me home, it was nice to spend time with him. My sister Victoria stayed the night with Grace. I'm so glad she could come and help us.

We received a gigantic stuffed bear in the mail 2 days ago. It takes up 1/2 of Gracie's bed. She is going to be so excited when she comes home. There was no note so whoever you are, thanks. The generosity of all those around us continues to make me burst into spontaneous tears (of joy and gratitude).

Grace is scheduled to have a lumbar puncture again tomorrow morning and her 5th round of Chemo for the week. Then if all goes well, and her tests come back ok, Gracie may be able to come home tomorrow (July 4th).

We really want her to be home this weekend because we have definitely had our fill of Disney Movies and the Disney Channel. I (Melissa) think my brain is even mushier than before(if that's possible)!!!

Hopefully, we'll have her home for 10-15 days--as long as she doesn't catch a virus or something, then back to the hospital for her next round.

We hope this finds you well--Have a great 4th of July!!

And so it begins....

Ok. I never wanted to 'blog' but here goes. I'm starting this because our youngest daughter Grace, 5 years old, was just diagnosed with cancer and I needed an easier way to reach all of you.

So, other than feeling like we've been run over by a Mack Truck, we are doing all right. We don't even know how to thank everyone who has helped us through the past couple of weeks. It's been overwhelming to realize how many people love us and are concerned for our little family. Grace is doing as well as possible, the type of cancer she has is called Burkitt's Lymphoma. It's an aggressive cancer but also one of the most responsive to treatment. The mass on her neck is now almost undetectable (it used to be the size of an egg). She had that mass biopsied on June 16th--we found out it was malignant (cancer) on the 18th and found out it was Burkitt's on the 19th. The chances are amazing for this type of cancer--over 85% success rate!!!!! She had her central line (a Broviac--for anyone who knows about them) put in on the 23rd and while she was under sedation they also did bone marrow aspirations from both hips, a lumbar puncture and started her chemotherapy "reduction phase". We found out that her bone marrow and her spinal fluid is cancer-free!!!!!!! Her cancer is level 3--4 is the highest but she stayed a 3--hip-hip-hooray!!

She begins her "induction phase" of chemotherapy Monday, June 30th. She will be in the hospital Monday-Saturday at the very least. From what we understand, this next week will not be pleasant, it will be hardcore, hair falling out, nausea, etc, etc. We will try to post news of her condition as often as possible. My sister, Victoria, is here helping us figure out how to get organized.

We would have starved the past couple of weeks without the meals and snacks that were brought in from, the Stone & Handy families, the Pearland Ward members and the Barton Creek Ward members. The hospital staff could not believe the balloons, activities, stuffed animals, coloring books, cards and all things helpful that Grace (and we) received. From Q-tips and coloring books to a new camera, we can't believe the outpouring of love and concern. From across the country to next door, people have been praying and helping us more than we will ever be able to repay. We are so grateful for family, friends, church, co-workers and neighbors. Thank you, Thank you, Thank you. That doesn't cover how grateful we are but it's a start.

Gracie's big sisters, Jessica and Jane, are incredible--they have been sensitive and worried and trying their hardest not to be jealous of all the attention Grace has been getting. They made her posters and cards to help decorate her hospital room!! They have come to the hospital to participate in activities to help Gracie feel better. They have been bouncing from family to family every other day so mama and papa could be with Gracie. Jessica and Jane--You are amazing!!!!!

These pics are from her most recent hospital stays.