No Hair? No Fair!

Tuesday, September 20, 2011

Update - Stomach Inflammation and Line Infections

The Tuesday after Labor Day, my parents met with the Gastroenterologist regarding the stomach biopsy results. It showed definite inflammation of the stomach lining, but the cause was uncertain. When she met with her team of doctors on Thursday, they temporarily ruled-out GVHD, but were going to keep a close eye on it. Since she had lost 10 pounds from not being able to eat much or even keep food down, they decided to give her TPN (Total Parenteral Nutrition) with Carafate. TPN is given intravenously (along with the daily ritual of saline and magnesium). Carafate is swallowed an hour before eating to protect the stomach lining. Since then, this has helped, but it's still difficult to eat much.

Yesterday, September 18th, was a difficult day. Her temperature spiked and she ended up being admitted back at LDS hospital. They took blood from each of the three ports to culture. Her fever kept going up and down, so they mainly treated the symptoms while waiting. At 6pm tonight, they finally got the results that all three lines were infected.

As of 11:30pm she's feeling a little better, walking better, and her headache is finally gone. Now it's a waiting game while her symptoms get better. We still don't know the cause, just what it is and where. The doctors and nurses are watching her carefully as she heals. Hopefully she'll be able to return home soon...we'll keep you posted.

Sunday, September 4, 2011

Stomachs, Heros and Balloons

Julie and Paul have made the trek back to LDS Hospital every day this past week because of stomach pain, nausea, throwing-up, and not being able to eat much food. It's been very frustrating and painful, especially when just getting calories in her is key. Everything tastes horrible to her and it's hard to keep it down. On Thursday she met with the Gastroenterologist about her stomach pain. She went back on Friday for an endoscopy, which showed stomach inflammation. They took biopsy samples of the stomach lining. They are testing it for possible infection, GVHD (Graft vs. Host Disease), and/or a reaction to medicines she's taking. Unfortunately, it's a holiday weekend, so even with the testing being sent out stat, who knows when we'll see results. On the bright side, Julie is still super happy to be home...and her poodle has come out of the depths of despair and woe.

My mom took a photo of her hero, her brother Barry, who donated bone marrow stem cells for her transplant. We are still so thankful he was a match and he was selfless enough to help!

These are her 2nd Birthday balloons. In the Leukemia wing of LDS Hospital, everyone celebrates the bone marrow transplant day as the patients 2nd birthday. My dad went and got some fun balloons to celebrate this awesome day! She now has two birthdays a year... May 29th and July 20th. Mark your calendars!

Wednesday, August 24, 2011

She Escaped!

The last time I talked to my mom, she emphatically told me that she had escaped from prison. And she was dead serious. No more IV tubes attached 24 hours a day. No more beeping oxygen monitors. No more poking and prodding every 15 minutes. And no more hospital food! She is officially home and sleeping in her own bed again. She was given three goals to do at home each day: walk, eat, and rest.

Now the real fun begins. Multiple visits each week to LDS Hospital will continue for the next few years as they monitor her progress after the bone marrow transplant. They also watch for signs of Graft vs. Host Disease. As an incredible added blessing, she is currently showing no signs GVHD. It's a miracle that we are all very grateful for. With all the medicine, IVs, nutrition, exercise, and doctor appointments that my dad manages, I'm pretty sure he will have more nursing experience than my sister will by the time she graduates from nursing school!

Thank you to all those who have been fasting for Julie. It's been wonderful to see the outpouring of selfless and incredibly generous friends and family. Thank you.

More to come soon!

Wednesday, July 20, 2011

Bone Marrow Transplant today!

Julie and Paul during the bone marrow transplant

Julie had her bone marrow stem cell transplant tonight! The doctors started infusing at 7:28 pm and ended at 8:05 pm MST. She is still nauseated and sick from the past week of radiation and chemotherapy to get her ready for the transplant, but overall, we are all very happy with how she's doing.

It can take as long as a year for the bone marrow to function correctly. Over the next 4 weeks, Julie will stay at LDS hospital as they closely monitor the transplanted marrow engraft, for blood counts to return to safe levels, and for nasty side effects to disappear. They also watch carefully for infection, bleeding, graft-versus-host disease, and/or liver disease. I'm sure she'll be super excited to be home following this month+ hospital stay!

None of this could have been possible without the help of her amazing brother. He was an incredible trooper to go through the pain and discomfort preparatory for today's transplant. We will be forever indebted to him for his love and generosity. We love and thank you, Uncle Barry!

Thursday, June 30, 2011

She's Back!!

Julie returned home on Wednesday and miss Flower has been loving every minute of it! Fortunately, her fever was not related to an infection, but an increase in bone marrow.

Julie would love to have visitors, but a quick call to make sure she is feeling well enough would be appreciated.

She returns to the hospital July 12th to begin radiation therapy.

Tuesday, June 28, 2011

Too Much Fun...

After returning home on 6/21, Julie went to the hospital for a quick platelet check-up on Wednesday morning. The doctors would like to see her platelet count at 30 and her count was at 4. As a result, Julie has been visiting LDS hospital daily to have her blood levels checked. She spends part of the day getting her blood drawn and tested at the hospital and the remainder of the day resting at home (and shopping for fabric for her bedroom makeover).

Paul has been an excellent nurse giving shots to increase her bone marrow production, giving IV fluids to prevent dehydration and administering medications to keep her comfortable.

On Saturday, we were invited to her sister's new home in Deer Valley where she partied and ate delicious food to her heart's content (which is not very much). Nurse Paul was on the ball and made sure to give her the medications and IV on time even at the party. We arrived home much too late, but she enjoyed every minute visiting with her mom, brothers and sisters.

Monday was a difficult day as the bone marrow production drugs caused her bones to ache. Early Tuesday morning, she was taken to LDS hospital due to having a temperature of 103.2 and a heart rate of 138. After being admitted, she was taken care of extremely well by the nurses and doctors. Her temperature has decreased and her heart rate returned to an acceptable level. Her doctor is hopeful that she will return home soon, maybe even tomorrow (6/29).

Julie sends her love and gratitude for all those who have helped her and her family with meals and notes that have lifted her spirits. All the meals were woofed down by her boys to the last crumb, especially the delicious chocolate chip banana bread and cookies.

**Update from 6/22/11**

Julie will begin radiation on 7/12 which will last for five days. Following the radiation treatment, she will receive her bone marrow transplant.

Wednesday, June 22, 2011

Chemotherapy - Round 2

The past week has been spent up at the hospital again. This was the second round of chemotherapy. This time she knew what she was getting herself into. It wasn't easy, to say the least, but she is surviving the severe nausea and pain.

Today the doctors told her she was allowed to go home. So this evening, my dad packed her up and took her home. She is incredibly sick still, but glad to be home and sleeping in her own bed.

On July 5th, she will begin radiation and chemo treatments. On day number 9 of this treatment, she will have the bone marrow transplant. Any prayers and/or fasting would be greatly appreciated in preparation for this approaching day!

We really appreciate everyone's love and support right now via phone calls, but it's been overwhelming. Paul and Julie have asked that all friends and family refrain from calling them for the time being. Email messages, Facebook posts, or comments on this blog are welcome and appreciated. They may not respond, but they definitely read them. If you need an immediate response, please email or call me (Jessica) or my sister, Courtney. We will contact our parents and get back to you. During the Hat Party Open House, we handed out little cards with the blog address on it and it also had our phone numbers and email addresses. Feel free to contact us. Please let me know if you need our contact info emailed to you.

Thank you for all your faith and prayers!

Saturday, June 4, 2011

There's No Place Like Home

Ok, I admit the title of this blog entry is a little cheesy, yes. But it could not be more true for this week. After 23 days at LDS Hospital, Julie was able to come home for a few days.

Three days ago, the doctors said her neutrophil level was at 300. She needed a 500 to go home. Yesterday she was at 1000 and today she skyrocketed to 3000! My brothers and I spent the entire day dusting, vacuuming, and cleaning every inch of this house as my dad (Paul) went up to the hospital to pack her up and take her home! I don't know who's more excited to be home...my mom or my dad.

Even though Julie is home, visitors are still very limited due to her incredibly low immune system. She would love to see everyone that she can this week, but we were advised from a panel of doctors that it wasn't the best idea while she is "on vacation". Please email or write a note on the blog or her Facebook page. She reads these almost every day. She told me she feels uplifted and blessed by so many people offering prayers, support, and love. It's amazing how people rally together to lift and strengthen each other. We are truly blessed. Thank you!

Next Wednesday Julie will go back for another bone marrow biopsy. After the testing, she'll be admitted for another 21-24 days for the second round of chemotherapy. She will definitely be needing all the faith and prayers to get through it. Afterward, she'll have another short "vacation" and then return for 7 days of combined chemo and radiation. This specific 7 days will be the worst. This will kill white and red blood cells. The bone marrow transplant will occur at the end of those 7 days. Recovery can be long and tricky. We were warned of Graft vs. Host Disease and the effects thereof and other complications that can arise. Without the bone marrow transplant, the average rate of survival is 25% at her age. With the transplant, it goes up to 50%. We have faith in these doctors and believe in miracles.

Keep us in your prayers!

Red Satin Sheets

The Primary Presidency and Relief Society Presidency from my mom's ward both came to visit my mom this week. They're such great women! I'm impressed they drove all the way up here just to hang out with my mom. It brightened her day immensely. Sister Robbins, who has been through cancer (twice) herself, had a great gift for my mom: a red satin pillow case. If you notice the band-aid on Julie's elbow...it's because they yucky hospital sheets were rubbing her elbows raw. Eek! My mom was in HEAVEN with the pillow case! That afternoon, I took off to Bed Bath and Beyond and bought the set.

The nurses were THRILLED! They were all excited to help put the sheets on and take her photo. Julie LOVES them! Just the added color to the room makes everything a little more lively. Maybe I bought her a couple pairs of cute pajamas and plush robe too, instead of those awful hospital gowns. Who thought those gowns were a good idea?! I bet whoever designed them, never slept in them, that's for sure.

The next morning, she didn't stop raving about the sheets. It was a good night...which, if anyone has stayed at a hospital knows—is a very good thing. :)

My Hot Mama

I need one of these robes now. It's amazing.

Hair (or the lack thereof) is all the rage these days!

Last Sunday evening, Julie asked Courtney to give her a hair cut. Check out the video. It's great!

Courtney & Julie

On Wednesday morning, Wendy (Julie's sister-in-law) came up to the hospital and shaved my mom's head. It was epic. Julie never let Cameron (her son) get a mohawk, so she decided to do it for him. The results were amazing. Thank you Wendy!!!

BEFORE

MOHAWK

Jessica, Julie, Wendy

Tuesday, May 31, 2011

Happy Happy Birthday!!!

Courtney made her an incredible German Chocolate GF Cake. Yum.

The Chemo Bean and her Family

Jessica, Jasen, Cameron, Clayton, Christian
Ana Paula, Courtney, Paul, Julie

We have a WINNER!

Julie's 6 siblings were tested as possible bone marrow donors 2 weeks ago. The results came back on Friday evening. Her older brother, Barry, is the one perfect chromosomal match. He is willing and ready. We cannot express how eternally grateful we feel to have such an incredible family. It's truly a miracle that we have a perfect match. Thank you for all your many prayers and thoughts regarding this delicate matter.

We will keep you updated as soon as we know more.
In the meantime, check out these links below.

Stems Cells and Peripheral Blood Stem Cell Collection
Blood cells grow in the same way as other human cells. They develop in the bone marrow from a parent cell known as a stem cell. Stem cells are immature cells that can develop into all of the different types of blood cells: white blood cells, red blood cells and platelets. Stem cells are usually found inside the bone marrow spaces of large bones. They can also travel from one bone to another by way of the blood stream.

In a blood and marrow transplant, stem cells are harvested, either from the large bones or from the blood stream, and transplanted to the patient. Stem cells collected from the pelvic bone in the lower back are called bone marrow. Stem cells harvested from the blood in the veins are called peripheral blood progenitor cells. This is why blood and marrow transplants are often referred to as blood stem cell transplants.

Stem cells can be collected from the blood. This procedure is called a peripheral blood stem cell collection. This technique does not require surgery. It does, however, involve a few more steps than a conventional bone marrow harvest. Prior to the collection, the donor is given a medication to promote the growth and release of stem cells from the bone into the blood. The stem cells are then collected using a special machine called a Cell Separator. This technique has dramatically increased in popularity over the last ten years.

The transplant process works like this: stem cells are collected from the bloodstream in a process called apheresis. The cells are frozen and stored. Patients are then given very high doses of chemo to kill the cancer cells. The patient also gets total body radiation to kill any cancer cells that the chemo might miss. After treatment, the stored stem cells are given to the patient as a blood transfusion. The stem cells settle into the patient's bone marrow over the next several days and start to grow and make new blood cells.

People who get a donor's stem cells are given drugs to prevent rejection as well as other medicines if needed to prevent infections. Usually within a couple of weeks after the stem cells are given, they start making new white blood cells. Then they begin making platelets, and finally, red blood cells.

Patients having stem cell transplants have to be kept away from germs as much as possible until their white blood cell count is at a safe level. They are kept in the hospital until the white cell count reaches a certain number, usually around 1,000. After they go home, they will be seen in the outpatient clinic almost every day for several weeks.

In general, transplants in first remission have a better chance of a good outcome than transplants received later or when the disease is not in remission. A large study of more than 1,900 ALL patients showed that allogeneic transplantation with a sibling donor is the best treatment for adults with standard-risk ALL in remission.

Go here for more info:
Be The Match

Sunday, May 29, 2011

Open House Hat Photos!l

I think I can speak for my whole family when I say we were completely overwhelmed by the amount of love shown at the Hat Open House yesterday! So far, we have collected about 49 hats and scarves for Julie. It was a fantastic success! Thank you SO MUCH for coming and brightening her day! The cards were an added bonus. She loved them all!

After the two Open Houses, Courtney and I brought all the hats up to the hospital for Julie to try on. We got photos of most of them. We loved how the hats and scarves matched the personalities of those giving them. Thank you again!

If I have mislabeled the caption, please please please let me know. I did my best to keep them all straight!

Which one is your favorite?! This doesn't count as a "hat", per se, but I personally love the wig that my aunt Wendy brought my mom. You'll see I'm much better as a brunette than a blond. :)