Good Days and Bad Days

November 5, 2005

Dear Friends and Family,

Just an update on Kerstin’s condition. The chemo is really starting to take its toll on her now: physically and mentally. She has very little energy and no appetite. She does have brief moments of “pep”, but they are cut short by fatigue. During the past couple days we have also watched our energetic and spirited little girl slip in to a state of depression. Her doctors state this is a normal part of the disease, but that doesn’t make it any easier. As much as we would love to have visitors to help cheer her up, we are asking that she does not receive any visitation until further notice. She is finishing up her last dose of chemo tonight for this cycle and it is now that she is at her most vulnerable for getting sick from the common germs carried by most healthy people.

Annie and Jeff are still able to see visitors though. We would welcome a friendly face and would be happy to sit down in the 6^th floor waiting room to visit for a few minutes. All we ask is that you call ahead to see what is going on at the time (402-955-5400). We would feel bad if you stopped by and we were not available to see you because we were busy with Kerstin.

We want to thank everyone again for the prayers, good thoughts, and gifts. We continue to be overwhelmed and humbled by the out pouring of love and thoughtfulness from friends, family, and friends of friends and family. God is truly taking care of us and we hope that he is looking after you as well.

Jeff and Annie Leaf

Star Wars Invasion

There were Storm Troopers, X-Wing Fighter Pilots, and Jedi Knights. (Click on "Star Wars Invasion" for more pictures.)

School Time

Miss Maggie is the hospital teacher. It's not the same as going to Rousseau, but it's the next best thing. She will work with Kerstin for 30-45 minutes a day (Monday - Thursday).

Salon Day

Maybe a little shampoo will take that spike out of it.


And then the fingernails need to be done.


And finally a new haircut. (Click on "Salon Day" title to see more pictures.)

A Little Computer Time

The play room has lots of fun computer games.

Benefit Production for Kerstin Leaf

Kerstin's dad is part of a musical production at Sheridan Lutheran Church. After Kerstin was diagnosed, the cast and crew held a meeting to discuss what they could do to help Kerstin and her family. It was their decision to donate the proceeds from the musical to Kerstin. This is a very generous act by our Sheridan family. The following is an announcement sent out by those in charge of the show.

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Sheridan Lutheran Church (6955 Old Cheney Road, Lincoln) will present a dinner theatre production of "Joseph and the Amazing Technicolor Dreamcoat." In this musical, the biblical saga of Joseph and his coat of many colors comes to life in a delightful musical parable. Performances will be held November 11th, 12th, 17th, 18th & 19th. Dinner and entertainment will begin at 6:00 p.m. with the performance starting at 7:30 p.m. Tickets are available by calling the church office at #402-423-4769 or visiting us online at www.sheridanlutheran.org Ticket prices are $15.00 for dinner and the show or $7.00 for the show only. All proceeds from the production will go to the Kerstin Leaf Fund.

Kerstin is a 5-year old member of our congregation and was recently diagnosed with Acute Promyelocytic Leukemia. Kerstin’s father, Jeff, is a member of our production. If you have any other questions, please email Kristen at k.works@sheridanlutheran.org or Jen at j.schultz@sheridanlutheran.org. We hope you will join us!

What We Need

November 3, 2005

Dear Friends and Family,

Thank you for all of the prayers, good thoughts, gifts for Kerstin and McKinsey, gas cards, phone cards, and the occasional meal for Annie and Jeff. The dust is finally settling, and we are getting a clearer picture of the road ahead of us. It is long and difficult, but we know the journey can be made with the help and support from all of you.

One of the questions we get all the time is: “What can we get for you or the girls?”, or “What do you need?, or “What can we do for you?”. Up until now we have been asking for only prayers and good thoughts. However, now that we have a better picture of what lies ahead of us we have come up with a list of things that would lesson the stress of this illness.

With at least three more weeks of living dual lives between Lincoln and Omaha plus many more trips to Omaha in the future, it is clear to see that our fuel usage is going to be high. We can certainly use fuel gift cards. Gift cards to Hy-Vee, Wal-Mart, or other restaurants would be welcome as well. As much as we dislike asking for money, we are finding that we need to accept the generosity of those around us to help us through this ordeal.

One major item that we would like is to have our house professionally cleaned before Kerstin is discharged from the hospital and comes home. Our goal is to provide the cleanest environment we can for her while she is recovering from treatment.

We have also set up a fund in Kerstin’s name at our credit union. The money in this fund will be used for covering medically related expenses. Donations can be mailed or taken in to any of the three Liberty First Credit Union branches. They are located at:

6001 S. 56^th St.

Lincoln, NE 68516

501 N. 46^th St.

Lincoln, NE 68530

5101 N. 27^th St.

Lincoln, NE 68521

Just let them know that the donation is for the “Kerstin Leaf Leukemia Fund”. If you have any questions, you can call them at (402) 465-1000.

Many people have inquired about donating blood or getting tested for matching bone marrow in case a transplant is needed. Fortunately a bone marrow transplant is not needed at this time. This type of leukemia responds primarily to chemotherapy, and bone marrow transplants are needed only if the leukemia returns. As for donating blood specifically to Kerstin, her doctor says that is complicated and costly. Apparently there are extra fees associated with it, and any time blood products have to have extra labeling there is an increased risk of a labeling mistake which might cause the recipient to receive the wrong blood. Instead, Kerstin’s doctor urges people to become regular “anonymous” donors. This is the best way to help those in need of blood.

Asking for things is never easy. However, we can now put ourselves in the place of thousands of other parents who have been faced with this or a similar situation. It truly changes your perspective on life. We are blessed to have such caring friends and family who have already expressed a desire to help us in any way they can. Most of all, we can use your prayers. In the end we know that God will provide us with everything we need.

Thank you and God bless you all,

Jeff and Annie Leaf

Big Sister

Many people have inquired about Kerstin's big sister; McKinsey. McKinsey is doing very well. She knows that her little sister is sick, and needs to spend a long time in the hospital to get better. McKinsey has been very un-selfish duing this difficult time and we catch her doing thoughtful acts of kindness for her sister. For example: today McKinsey found a giant maple leaf on the ground, brought it home, covered it with plasic wrap, put it in a book (to keep it flat), and wants to give it to her sister to put in her hospital room to help make her feel more at home.

McKinsey is dealing with her own situation as well: braces. McKinsey got braces put on a week before Kerstin was diagnosed. [ What else can we add to the "list"? :) ] McKinsey will be spending weekends in Omaha to be with her sister. During the week, when her mom and dad are unable to be at home with her, we have grandpas, grandmas, aunts, friends, and nieghbors lined up to stay with her. It's truly touching to have so many people willing to open up their homes to us (or willing to stay at ours) in this time of need.

Live Entertainment

A harp player (a harpsist???) came to the hospital today to play some tunes. She had a music book of all Disney songs the kids could make requests from. Kerstin even got to pluck the strings herself.

New Room With A View

Kerstin has an awesome view of east Omaha from her new room. We watched the sun come up this morning...

OK, I watched the sun come up this morning. Kerstin deserved to sleep in after the rough day she had yesterday. (Click on "New Room With A View" for more pictures.)

Appetite Returns

After a good nights rest (and some good anti-nausea drugs), Kerstin finally got her appetite back and ate a good breakfast.

New Bunk Mates

Kerstin has been getting many new critters and dolls to keep her company. Here are a couple of the latest.

Lounging

Halloween in the Hospital

Even though the kids (and staff) are stuck in the hospital for Halloween, they still managed to dress up and go trick-or-treating. The nurses dressed up in Wizard of Oz attire for the occassion.

The Anchor

This is what Kerstin gets to drag around with her wherever she goes. We have affectionately named it: "The Anchor".

Rough Day

In addition to the stress of moving rooms, Kerstin is really starting to feel the effects of the chemo now. She is pretty lethargic and nauseated today (vomited six times so far today). Didn't make it to the play room today either.

We Moved

Kerstin got moved to a different hospital room today. She is now in room 616. It's a little bigger room with a better view. Annie got stuck with the chore of moving all of Kerstin's "personal belongings". Fortunately she was able to recruit the help of a couple of staff members and it went pretty smooth.

Thank You

Annie and I just wanted to take this opportunity to thank everyone again for their out pouring of hospitality. We also wanted to thank you for all of the comments that are being left. Just FYI: Kerstin will be answering some of your messages, but unfortunately time (and a short attention span) will not allow her to answer all of them. However, please know that all of your comments are being read and are greatly appreciated.

Settling In

Toninette knew exactly what Kerstin needed to start making her hospital room feel a little more comfortable.

A New Journey

The following letter was emailed to friends and family on 10/28/05
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Dear Friends and Family,

First, thank you for all of your prayers, good wishes, and offers of help. We are truly blessed to have you all in our lives. We would love to thank each of you individually, but the outpouring of love is overwhelming and it would be impossible for us reach out to each of you and express our thanks adequately. Trust us when we say that everybody’s kindness is noticed and tucked away for future reference.

Next, we have had many questions about Kerstin that we have not been able to answer. Here’s what we know. She has been diagnosed with Acute Promyelocytic Leukemia. The good news is that if you are going to have one of these types of leukemia, this is the best one to have. Kerstin will be in Children’s Hospital (Omaha, NE) for approximately 30 days during which time she will receive chemotherapy. After that, she will be in “remission” and get to go home to Lincoln. Unfortunately she will not be able to go back to school right away or resume any of her other activities while she continues chemotherapy on an outpatient basis. After two more rounds of outpatient chemotherapy (which last 10-14 days each, with about a week in between), she will be on a maintenance drug therapy for about a year. At this time, there is no need for a bone marrow transplant. (Again, thank you for the outpouring of willing donors.)

Until then, Kerstin can receive visitors at the hospital. Here are some of the rules: “Parents and/or grandparents may visit any time. All other visitors may visit between 8:00am and 8:30pm. Siblings may visit after passing a screening process (for illness or infection). Children other than siblings must be toilet trained in order to visit. Siblings or friends must stay in the child’s room, and are not allowed to go to the playroom without the patient and guardian.” Additionally, the chemotherapy Kerstin will be receiving will lower her immune system and there may be times that no visitors will be allowed. The best bet is to call first to see if visitors are allowed that day. If you have a cough or are sick yourself, please do not plan on visiting at that time. (We just can’t risk having her catch any unnecessary germs.) As far as flowers and balloons, no live plants are allowed and only Mylar balloons (no latex products).

As for Kerstin’s big sister McKinsey, she is handling the situation very well. It is obvious that the two miss each other which is evident when McKinsey is able to visit Kerstin in the hospital. (It’s hard being away from your best friend.) The amount of offers to take care of McKinsey is heart touching, and I know we plan on taking many of you up on that offer. Just FYI, McKinsey is tackling her new health challenge as well: braces.

As for Kerstin herself, she is taking this in stride. Right now it is like a vacation in a hotel room (except you don’t have to pull your IV pole around with you at a hotel. ☺) Anyone who knows Kerstin knows she is a pretty tough little camper and she is holding up very well. We still have a long road ahead of us and we are pre-paring her for the journey. She hasn’t even complained about any of the procedures she has had to endure. She is very brave and we are very proud of her.

As you can imagine, we are a little overwhelmed right now with trying to learn as much about this disease as we can, spending time at the hospital (one of us will be there 24/7), and balancing our lives outside the hospital. With the help and support of our friends and family, and our faith in God, we know that we will get through this part of our life journey.

Take care and may God bless you all,

Jeff and Annie