November 20th, 2009

After 8 months of intense chemotherapy, Neely’s oncologists decided to try two different drugs. The intent is to give her more of a less toxic chemo, and in turn have her spend less time in the Hospital. The new protocol started October 26th.  Like almost everything else, what we saw is not what we were expecting.

The chemo was devastating within two hours. Extreme nausea, and a very sick little girl. We were back at the hospital. The last 26 days have been the hardest. While Neely has had some good days, the effect of this chemo has even surprised her doctors. She was scheduled to get her last chemo on November 16th. It did not happen. She’s still neutropenic and is just starting to feel better. Neely should, with any luck, have a good Thanksgiving. Then on November 27th, we are scheduled to start the last chemo session. She’ll be admitted for 5 to 7 days and then we go home to heal.  Dr. Malempati has agreed that the dose needs to be lower. Hopefully, we end on a better note.

We’ve come a long way. Our spirits are high because we can see the end. The holidays are ahead of us and Neely should be in good shape for Thanksgiving and Christmas. Neely wants to get some sun on her face and sand between her toes. We are hoping to get a week in Hawaii before she starts back to school in January. She is really looking forward to going back to school. She’s probably attended 7 days of fourth grade so far and misses her classmates and her teacher. She has tried to keep up with reading and assignments, but it’s tough when you don’t feel good. She loves to read, and reads well. She’s smart. I have no doubt she’ll jump back in and finish fourth grade strong.

So we are looking forward to a new phase of this battle. Thank you for the continued support and prayers. The Cathedral fourth graders and their parents have been fabulous. Our families have been with us all the way. Kristie is a warrior; simply unbelievable what she has been through and what we’ve accomplished.

The home stretch!

Bob

November 12th, 2009

We have had some really good days and some not so good days.

I got to go to California to see my friend who moved to Dana Point.  Devon and I met at Corona Del Mar beach on Saturday morning. We went boogie boarding and body surfing, then it got a little foggy so we went to our hotel we had our own pool in our suite!!!! That night was really fun. We had a barbeque at Devon’s grandparents’ house in Laguna Beach. The next day we went shopping at Fashion Island and since Devon’s dad got a new job at Hurley, we got to go there and design our own shoes! That night after dinner my tummy didn’t feel so good but after a while I felt better. The next morning we said goodbye to Devon and left. When we got home I got more chemo. This new chemo was supposed to be less hard on me. My dad will tell you about it tomorrow.

-Neely

October 8th, 2009

Well, it was good while it lasted. Thanks to Victor and Jim Winkler, and the Portland Trailblazers, Neely and her friends went to see the Miley Cyrus concert at the Rose Garden. The Blazers gave Neely their suite and the girls had a great time. Neely has been able to get in a few days of school, and even go to Volleyball practice a couple of times. September was tolerable.

October is different. The last chemo has been hard. Five days of chemo, followed by daily clinic visits, brought us back to the harsh reality of needles, nausea, and more hospital time. Neely came down with the fever. We started at the ER late Friday night and finally got admitted early Saturday morning.  Neely’s been back in the hospital two weeks out of three. The entre ward is  on quarantine due to concerns about flu. Most of the kids have viral infections, including Neely. We hope we can get out this weekend.

We’re having serious discussions with her oncologists about changing the entire treatment program. When we started treatment, the schedule had her finishing this month. Neely has put in the time, but because the chemo has been so hard on her immune system,  she’s only gotten 70% of the chemo her protocol called for. We are going to try a broader range of drugs, administered through daily outpatient visits for six weeks. We could still be done by Thanksgiving. Her Oncologist is optimistic and so are we. While this has been really tough, theoretically the chemo has taken its toll  on the cancer too.

Bob Kristie, Nick and Neely

September 10th, 2009,

Cycles five (5) and six (6) are behind us. Things have gotten better. First of all, Neely’s Oncologist waited to give her chemo until she was healthy. We got through cycle 5 without a formal readmit for fevers. That was big!

Second, Neely got a smaller dose of chemo for cycle 6 and so far, no fevers.

Neely has had many transfusions, both blood and platelets, which take a full day but don’t require an overnight stay. Neely also gets a new drug that stimulates white cell development and helps her fight infection. And, about 7 days after chemo, Neely takes an oral antibiotic that helps fight infection. These adjustments to her treatment seem to be keeping her out of the hospital because she hasn’t been getting the fevers that were byproducts of the effects of chemo. Good job Dr. Malempati!

So the second ½ of August and the first week of September have been good. Neely got to spend 4 days in Bend and 4 days at Seaside. She loved Seaside and especially enjoyed the bumper cars and all the action on Broadway.

Neely really wanted to go to the first day of school. So, Monday (Labor Day) we went to Doernbecher to have her port de-accessed. What we thought was going to take about an hour, turned into an all day / all night marathon. Neely needed two transfusions. Just about the time her last transfusion was finishing, she accidently pulled the feeder lines from her port and the needle stuck her in the chest. It was not good. Neely had to be re-accessed, flushed and de-accessed. We finally got home about 11PM. The next morning Neely was the first one up and excited to go to her first day of fourth grade. Neely is a superstar!

We’re behind schedule by about a month, but that’s OK. We should be done with treatments by Thanksgiving.

We are hopeful this new trend continues because it has cut our hospital time in ½.

Thank you for the support.

Bob, Kristie, Nick, and Neely.

July 14th, 2009

The second ½ of May, all of June, and the first ½ of July have been awful. The chemo was really difficult and the ensuing fevers added all sorts of complications.  Neely endured needles, nausea, fevers, hospitals, platelet and blood transfusions, big time antibiotics, emergency rooms, and more nausea and more needles.

There were some bright spots: June 19th, Neely graduated from 3rd grade and got to celebrate the last day of school with her classmates.

Neely got a big check from her agency for her modeling work with Intel. She’s made more than me this  year!

The balance of June Neely was getting chemo, recovering, getting fevers, and recovering. It’s a lousy cycle.

Neely was discharged on Friday July 3rd. We had big plans for the Fourth. The Texas Brisket was in the smoker when the fever hit. We ended up in the Doerenbecher ER on Saturday afternoon on the Fourth of July. We were readmitted less than 24 hours after she was discharged. We didn’t get out until the next Saturday, July 12th. It was 14 days in the hospital out of 15 days.

Neely had a CAT Scan on the Fourth of July. I could see the fireworks at the waterfront as Neely was getting wheeled into radiology for the scan. I felt so bad for her. She was really looking forward to a well deserved Fourth of July celebration. The good news: No tumors anywhere. Clean scan. Not a bad Fourth of July after all.

We’re four (4) cycles down, and six (6) to go. Dr. Malempati, Neely’s oncologist, continues to work with us. I think we’re going to dose the chemo down a bit. We also have a plan to try and fend off those fevers. Hopefully the next two cycles will be easier.

Kristie is doing great! She is tired, but continues to do what it takes to push through this. Kristie is healthy.

Today is Tuesday, July 14, 2009. Neely’s blood counts were too low for chemo this week. Even though she gets the week off, Neely is one tired little trooper.

Number five (5) is next Monday, July 20, 2009. We get through that one and we’re half way home.

Keep up the prayers and thanks for the support.

Bob Niehaus

May 19th, 2009

May has been OK. More hospital time due to chemo, then infections and fevers, but Neely got out Saturday night May 9, 2009, and spent a wonderful Mothers Day with all of us at home. Kristie was thrilled. We were all thrilled.

We de-accessed her port and took out the shunt in her leg. Her counts were generally up, so we were hopeful she’ll make it until the next scheduled chemo, which was about a full 8 days away.

The weather was scheduled to be great over the weekend of May 15th. Neely really wanted to go to the cabin, so I called Jesse the pool guy and Joe the contractor. We didn’t think we’d be able to do the cabin thing this year so, we had much work to do to get things ready. The guys were busy, but dropped all their projects and got us squared away. They came through for Neely. Thanks guys! Neely and Devon swam, I barbequed and drank martini’s, and Kristie and Dixie shopped and napped. We dined at The Good river in Mosier Saturday night. Neely’s got a baseball cap with a wig sewn into it. She loves it. She can throw it on or plop it off effortlessly. It’s comfortable and looks great. So far she’s kept her eyebrows and eyelashes. She’s got a tan and looks great!

We pushed Neely’s chemo off until Wednesday, May 20. She enjoyed a healthy, long break. Life was good again.

Chemo is tomorrow. This is a scheduled 3 day stay with a different combination of drugs. With any luck and the help of the skilful nurses at Doerenbecher 10 South, Neely will be out Friday or Saturday. We’ll keep you posted. Thank you for the prayers and support.

Week of April 20th, 2009

Neely had two pretty good days: Monday and Tuesday the 20th and 21st. Tuesday she went to track practice and saw her Cathedral friends. It was a beautiful evening so after practice we went to Ben & Jerry’s for an ice cream treat. Even after explaining the circumstances, the owner, Mrs. Kaplan, turned us away. We don’t expect special treatment, but one scoop of ice cream for a little girl fighting cancer? We hope the next time we go to Ben & Jerry’s, Mrs. Kaplan is having a better day.

Wednesday Neely had another surgery. We arrived at Doerenbecher @ 10:00 AM and finally had the procedure at 4 PM. Neely had 3 teeth extracted as she had gotten an infection that could have created serious complications with the chemotherapy. It was a long hard day.

Thursday Neely had an emotional day. Her hair was falling out, and by Friday it was mostly gone. Her old wig doesn’t fit anymore so we’re working on a new one. The hair thing really bothers her this time.

The weekend was pretty good. Her energy was up a bit and her spirits were better. She picked the menu for my Sunday Birthday party: Beef Brisket and Pork Ribs. Sunday was a good day. We partied at Nana’s house!

April 21, 2009

As predicted, the unexpected is the norm. Neely had a great Monday, even going to school for a couple of hours. She was “super student of the day”. Tuesday and Wednesday were generally good. Thursday everything changed. We spent the morning at Clinic and started  with another traumatic event accessing her port. The blood work showed virtually no white cell count and borderline red cell count. She was at her most venerable to infection, including from the natural bacteria in her own body. By 6 PM we were in the ER with a fever over 103. By midnight she was admitted. Neely was on antibiotics for 4 days and finally went home Sunday afternoon. So far, two weeks of treatment has resulted in 9 days in the hospital.

We’re hanging in there, but this is going to be long and hard. 29 weeks to go.

April 12, 2009

With surgery and radiation behind us, but still fighting a staph infection, Monday, April 6th we checked Neely into Dorenbecher Children’s Hospital. At 10:30 AM there were more kids than beds in the Oncology ward, so Neely got prepped in Clinic. It is a traumatic experience for Neely (and me) to have her port accessed, but with numbing cream and a skilful, compassionate nurse, Neely didn’t shed a tear. Finally, by 3 PM we got a room so Kristie and Neely moved in. Chemo started at 5 PM.

Neely received chemo every day through Friday. The nurses did a great job managing pain and nausea.

Kristie did not leave Neely’s side until Thursday. Thursday Kristie went home to shower and meet a friend for lunch. She didn’t make the lunch, but caught 5 hours of much needed sleep at home. Thursday night was good. We dined in with burgers and corn dogs from Raccoon Lodge. Neely had a good appetite and was in good spirits. After dinner she logged on and discovered the first of her e-mails from her coaches, her teacher, and her friends. Neely was thrilled. After reading and responding to e-mail, she went to the play room where she met the “twins” ;volunteer twin sisters. They were pretty cool.

At 9:30 PM Neely was hungry. She had a craving for filet mignon and a baked potato with lots of butter. So, off to the Charthouse I went and got a filet and baker to go. She at the whole thing!

7 PM Friday night we checked out. We were all Home; Neely, Nick, Kristie, Dixie, Trixie (Neely’s cat and her five new kittens), and me. Home is good.

Saturday was great. Neely found a giant care package from her 3rd grade classmates waiting for her. Cathedral rocks!

Easter Sunday was great. Neely was in good spirits and had a ball at the annual Niehaus Easter egg hunt.

Kristie and Neely are champs. It was a long week, but neither one complained.  

Week one is done…30 more to go.

April 6, 2009

To Our Friends
To The Cathedral Community
To The St. Thomas More Community
To The Jesuit High School Community

Re: Neely Niehaus

Thank you everyone for the calls, e-mails, and offers to help.

Both Kristie and Neely had a tough March. Kristie had surgery March 17, 2009. The good news is that Kristie gets stronger by the day and she is expected to have a complete and unconditional recovery.

Neely’s tumor reoccurred and was removed March 10, 2009. She just finished two weeks of radiation and starts Chemo this week. The treatment regimen will be difficult. She is scheduled to spend one week out of every three at Dorenbecher Children’s Hospital. If all goes well, she should be finished and healthy by November.

Based on our experience the first time around, nothing about chemotherapy is predictable. So, we will be reacting to Neely’s health needs daily. Most meals will probably be on the run, and we may be spending a lot of time at the hospital. So while we really appreciate the offer, it’s probably not practical to organize any food deliveries. Fortunately The Chart House is one minute away from Dorenbecher and they’re stocking up on Vodka for me and Champagne for Kristie. It helps.

Neely loves her brother Nick, her classmates, her friends, animals, basketball, fashion, and vacations with room service. So, we got her an e-mail address and a new laptop. I think the next seven months will be easier if she can stay connected with friends, classmates and her other interests; her email address is neelyfn at gmail dot com. Go for it. (Address disguised to hide it from spam crawlers.)

Nick has activated Neely’s web site; www.neelyfrancesca.com, and we’ll try and keep you up dated. Dixie, my wonderful mother-in-law, is living with us and helping immensely. The rest of the family is on call when we need them.

We need to stay positive and we need your prayers. We are fortunate to be part of the Cathedral, Jesuit, and STM Communities, and we look forward to getting Neely back in class and enjoying her life again.

Thank you,

Bob Niehaus