History

Friday, July 22, 2011 7:35 PM CDT

July 22, 2011

Today Hannah turned 20 years old! While every birth is a miracle, her life is miraculous. We celebrate every day but today is just extra special. On her 14th birthday she had a 10% chance of living and today she is certainly living her life to the fullest! She spent the day at Baker helping with registration and being with her friends. That’s just what she should be doing.
We had our Relay For Life event a few weeks ago and Hannah was the keynote speaker. She also spoke at the KU Relay in April. She certainly understands the difference that fundraising makes in the fight against cancer. One of her experimental drugs was funded by the Relay For Life. She is Hope.
A lot has happened over the last year. Hannah’s health continues to be good. She is fully recovered from last year’s surgery. She finished her sophomore year at Baker and is taking summer classes right now. She is looking forward to her junior year and is planning to spend the spring semester studying in England. Since she will need her monthly IVIG (donor antibodies) infusions, her immunologist and oncologist have agreed to help get this set up. I figure that cancer should not interfere with her ability to do anything she wants, and she really wants to study abroad!
Jacob graduated from Baker in May and is considering going to graduate school. I think Bob and I are going to have withdrawals this fall when we aren’t watching Jacob play football. I went back to school last year and graduated in May. There was a lot going on, but we made it through! We’ve been through rough times, so we recognize the difference of just being busy. Busy is good.
My dad had a second stroke last September and passed away on December 16th. It was a difficult time, but our family was all together and we are grateful for the memories we have. I talked to the Baker campus minister and he told me, “There are times when a parent’s last lesson to his child is to teach them how to die.” My dad taught me so much and his final lesson was just that. He was a wonderful example all through his life. My mom’s brother and brother-in-law passed away in the weeks after my dad. We are missing that generation of men.
Jake Cavenaugh, another of Hannah’s friends from treatment, passed away on Dec. 23rd. He was 22 years old and had metastatic osteosarcoma. We met Jake at the end of Hannah’s first year. After she relapsed he would come and visit her in her room. His mom said that Hannah inspired him – I think that he figured that if a younger girl could do it, so could he. He fought a hard, hard battle and never lost his smile.
Our life continues on. We are busy with all “the little stuff” but always cognizant of what a gift the little things are. We are so grateful for all of the continued thoughts and prayers of so many. We are aware of you, and you too have made a difference in our lives.
2 Corinthians 4:18
So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Please pray for:
1. Hannah’s continued health and her travels.
2. My mom as she lives on without my dad.
3. The families of children who have passed away.

Saturday, July 3, 2010 6:41 PM CDT

We got home on Thursday afternoon. Hannah’s appointment on Wednesday went well and we got instructions for taking care of all of the sites until we go back in July. The surgeon, assistant, and nurse were all very impressed with how well Hannah has recovered. Everything looks great according to their standards of recovery. As Hannah puts it her arm looks like a skinned cat. She has a huge indent on her wrist and the skin graft, well, it’s just gross looking! Her mouth looks good and we got instructions on what to keep an eye on. The surgeon said that he hasn’t seen one “go bad” this far out. Hannah has always been the one in the small percentile but this wouldn’t be a good time for that! Hannah will see a plastic surgeon at Children’s Mercy on July 8th and we will fly out to Denver again on July 21st. I will update after her appointments.

We stopped in Russell, KS on the way home to see my parents and eat dinner at my cousin’s house. My aunt and uncle were there too and we had a wonderful evening. Hannah had smothered steak and mashed potatoes pureed in a Magic Bullet, and then she had some cherry pie ala mode (pureed in the Magic Bullet) and decided that it would be a good investment! I had class on Thursday night so she and Bob went to purchase a Magic Bullet. We have had some good family time since we got home. It always feels good to be in your own home after spending time in the hospital.

Yesterday Hannah thought she felt some of the stitches in her mouth come out. When I looked into her mouth I could see the area where they had come out. Her palate was still pink, but we were a little nervous so I texted the surgical assistant. She texted me right back and said that they sutures can come out anywhere from 1 – 6 weeks and it should be fine. We were relieved and have carried on. The stitches in her mouth will dissolve (or fall out) on their own. We have to change the dressing on Hannah’s arm every day and rewrap and splint it. She has to keep it immobile because of the large skin graft. She is already tired of it. Overall she is feeling good and hasn’t needed any pain medicine since we got home.

We don’t have any big plans for the 4th of July because Bob has to work. We have plans with some friends to have a welcome home party for Hannah on Monday. We’ll have to bring the Bullet! We are getting ready for the Relay For Life on July 9th. Bob has a team, Hannah will walk in the Survivor Lap, Jacob is running the dunk tank, and I am still on the committee. My parents are coming to walk in the Survivor Lap too. We started to Relay in 1998 because it was a fun night with all of our friends, now we Relay because we know that it makes a difference. The money raised by people who took up the fight years ago helped fund one of the drugs that saved Hannah’s life. Rituxan wasn’t available for pediatrics when she was first diagnosed, but it was available when her cancer recurred. What we do today will make a difference in the lives of others in a few years. It’s up to us.

My prayer is that light will flood your hearts and that you will understand the hope that was given to you when God chose you. Then you will discover the glorious blessings that will be yours together with all of God’s people. Ephesians 1:18

Please pray for:
1. The grafts to remain healthy and continue to heal
2. Thankfulness for a quick recovery
3. The results to be what Hannah wants
4. Our friends who are in various stages of treatment and recovery
5. Our friends whose children didn’t survive
6. Other families who are facing uncertainty

Wednesday, June 30, 2010 8:59 AM CDT

We had a great day in the mountains yesterday! At first it felt like we were running away and then we finally relaxed and came back like regular people! It’s strange how it takes a while to shed the hospital feel. We took it easy because Hannah wears out quickly. Bob and I love Estes Park so we decided to make the loop through Estes and across the Rocky Mountain National Park. Bob and Hannah went on the Stanley Hotel ghost tour (that’s their thing) and I sat on the front porch looking at the mountains (my thing). Hannah was tired when they were done and slept in the car for a while. It was really relaxing to get away.

Hannah has a 9:00 AM clinic appointment to see the surgeon. He wants to look at her mouth and forearm before giving us the all clear to go home. She is still on pain medicine, an antibiotic, and a med for the mucous problem that she has. Ever since she was diagnosed in 2004 she has had a runny nose and sleep problems. The runny nose has been a bit more of an issue since her sinuses were closed. In the past she could take the opterator (retainer thing) and clean out her sinuses. That trap door has been closed! She has most of her pain in her arm and some in her neck/face and thigh.

Four days into the puree diet and Hannah is tired of mashed potatoes. It is hard to find pureed food in restaurants. It will be good to be at home and blend up our own food. At least we can experiment a little. I don’t know if I’ll be able to update tonight or in the morning. If I don’t, that’s a good sign that we are on our way home! I will update after we get home with the news from the appointment today. I’ll update after her appointments and periodically throughout the year, but we really don’t usually have anything worth posting about – that’s a good thing. Hannah will continue to get her IVIG (donor antibodies) once a month with a home health nurse. These are what she was doing once a week, but the immunologist understood that this routine wasn’t working for her college life and gave the okay to get by an IV infusion instead.

I remember saying a week ago that I couldn’t wait “for it to be next week” and well, it’s next week! We are so grateful for your support. We couldn’t have done it without you!

I will lead the blind on roads they have never known; I will guide them on paths they have never traveled. Their road is dark and rough, but I will give light to keep them from stumbling. This is my solemn promise. Isaiah 42:16

Please pray for:
1. The grafts to remain healthy and continue to heal
2. Thankfulness for a quick recovery
3. The results to be what Hannah wants
4. Our friends who are in various stages of treatment and recovery
5. Our friends whose children didn’t survive
6. Other families who are facing uncertainty

Tuesday, June 29, 2010 10:29 AM CDT

Tuesday:
We got to the Ronald McDonald House around 2:00 PM yesterday. Hannah immediately took a nap. We had picked up all of her meds from the Walgreens in the hospital so I made up a schedule to administer them. The only downfall of leaving the hospital is that there is only one nurse on duty at home! We got the middle of the night pain meds given and overall we all slept a little better. Hannah has become really congested and that is making it hard for her sleep. Her sinuses hurt too. We have a med for this, but she is still feeling bad because of it.

We bought Hannah some protein shakes so she can have food no matter where we are. She had mashed potatoes last night. This morning she got all of the meds taken,changed the dressing on her thigh, got her hair washed, and are just about ready to leave. Today we plan to drive to the mountains and find some clean, fresh, cool air to sit outside and enjoy. We don’t have a schedule so we will play it by ear. It’s our day to what we want!

Monday:
After a rough night, we had good news this morning! Hannah’s oxygen monitor kept going off last night (beeping, beeping, beeping!) and she had some pain and nausea around 4:00 AM. The good news was that when the surgeon came by at 7:00 AM he said that everything looks good! He asked if we wanted to wait in the hospital until he sees her in clinic on Wednesday or be discharged. We appreciate being asked, but we had already started making plans about what we wanted to do on Tuesday. We won’t get out early today because they have to pull the drain on her arm, change the cast to a splint, clean up the site on her thigh, and take the stitches out of her face and neck. Then of course we need all the discharge paperwork and meds, but it will happen today! We will hang out at a hotel tonight and tomorrow night, clinic on Wednesday and then start heading home!

Yesterday was a typical Sunday in a children’s hospital. There was a concert, but Hannah ended up sleeping through it. We went for a walk outside later in the afternoon. The Famous Dave’s pig stopped by and gave her a pink pig, two clowns stopped by and told us a couple of jokes, and a volunteer came by with a dog. Bob and I petted the dog; she had a dress on and really is good therapy! Hannah’s Aunt Sarah and my cousin and his daughter stopped by in the morning. It was a good day.

Since I started typing this earlier, the plastic surgery nurse and a hand therapist have already come by! The nurse took the stitches out of Hannah’s face but the ones in her neck need to stay in for another week. She changed the dressing on Hannah’s thigh and gave us the supplies to keep doing this on our own. Then she pulled the drain from Hannah’s arm! Yikes! It was a lot bigger than any other drain I’ve seen. They unwrapped her cast and took the staples out of her arm too. We got to see her wrist and there is a huge chunk missing, but apparently it “looks good”. Hannah asked for a picture. The nurse put another antibiotic dressing on it, and the hand therapist wrapped it back up. They made a plastic support that can eventually be taken off and put on until she doesn’t need it anymore.

We have packed up the room and Hannah is resting until we get the go ahead to leave. We are planning to drive back half way on Wednesday and visit with my parents and then get home on Thursday. Hannah will go see the doctor’s former partner in KC and then we’ll come back to Denver in thee weeks for another clinic visit.

Hannah gave me permission to share this story with you. She has the best sense of humor! She has a bit of a lisp because there is still some swelling in her mouth and with her cheek and lip. Last night she came out of the bathroom and said, “I really can’t take mythelf theriouthly with thith lithp.” I can’t help but smile every time I think about that. She doesn’t think she’s brave or inspirational because as she puts it, “I just did what I had to do” but I think that she does it very well. She said that I can tell her that she does things well. We parents of kids who have had to fight for the right to live and endure more than should have to be endured are truly blessed. We witness true strength every day. As our children live with and through so much and “do what has to be done”, so that they can get on with the life they want to live, we learn how precious every moment really is. It’s not just a given that life will always be a monotonous routine but when it is that’s a great thing! We also learn how important it is to show those you love the most, the best love that you have. I don’t think anyone has ever regretted being generous with their love. Thank you for sharing yours with us.

Teach us how short our lives really are so that we may be wise. Psalm 90:12

Please pray for:
1. The grafts to remain healthy and continue to heal
2. Thankfulness for a quick recovery
3. The results to be what Hannah wants
4. Our friends who are in various stages of treatment and recovery
5. Our friends whose children didn’t survive
6. Other families who are facing uncertainty

Monday, June 28, 2010 1:48 PM CDT

After a rough night, we had good news this morning! Hannah’s oxygen monitor kept going off last night (beeping, beeping, beeping!) and she had some pain and nausea around 4:00 AM. The good news was that when the surgeon came by at 7:00 AM he said that everything looks good! He asked if we wanted to wait in the hospital until he sees her in clinic on Wednesday or be discharged. We appreciate being asked, but we had already started making plans about what we wanted to do on Tuesday. We won’t get out early today because they have to pull the drain on her arm, change the cast to a splint, clean up the site on her thigh, and take the stitches out of her face and neck. Then of course we need all the discharge paperwork and meds, but it will happen today! We will hang out at a hotel tonight and tomorrow night, clinic on Wednesday and then start heading home!

Yesterday was a typical Sunday in a children’s hospital. There was a concert, but Hannah ended up sleeping through it. We went for a walk outside later in the afternoon. The Famous Dave’s pig stopped by and gave her a pink pig, two clowns stopped by and told us a couple of jokes, and a volunteer came by with a dog. Bob and I petted the dog; she had a dress on and really is good therapy! Hannah’s Aunt Sarah and my cousin and his daughter stopped by in the morning. It was a good day.

Since I started typing this earlier, the plastic surgery nurse and a hand therapist have already come by! The nurse took the stitches out of Hannah’s face but the ones in her neck need to stay in for another week. She changed the dressing on Hannah’s thigh and gave us the supplies to keep doing this on our own. Then she pulled the drain from Hannah’s arm! Yikes! It was a lot bigger than any other drain I’ve seen. They unwrapped her cast and took the staples out of her arm too. We got to see her wrist and there is a huge chunk missing, but apparently it “looks good”. Hannah asked for a picture. The nurse put another antibiotic dressing on it, and the hand therapist wrapped it back up. They made a plastic support that can eventually be taken off and put on until she doesn’t need it anymore.

We have packed up the room and Hannah is resting until we get the go ahead to leave. We are planning to drive back half way on Wednesday and visit with my parents and then get home on Thursday. Hannah will go see the doctor’s former partner in KC and then we’ll come back to Denver in thee weeks for another clinic visit.

Hannah gave me permission to share this story with you. She has the best sense of humor! She has a bit of a lisp because there is still some swelling in her mouth and with her cheek and lip. Last night she came out of the bathroom and said, “I really can’t take mythelf theriouthly with thith lithp.” I can’t help but smile every time I think about that. She doesn’t think she’s brave or inspirational because as she puts it, “I just did what I had to do” but I think that she does it very well. She said that I can tell her that she does things well. We parents of kids who have had to fight for the right to live and endure more than should have to be endured are truly blessed. We witness true strength every day. As our children live with and through so much and “do what has to be done”, so that they can get on with the life they want to live, we learn how precious every moment really is. It’s not just a given that life will always be a monotonous routine but when it is that’s a great thing! We also learn how important it is to show those you love the most, the best love that you have. I don’t think anyone has ever regretted being generous with their love. Thank you for sharing yours with us.

Teach us how short our lives really are so that we may be wise. Psalm 90:12

Please pray for:
1. The grafts to remain healthy and continue to heal
2. Thankfulness for a quick recovery
3. The results to be what Hannah wants
4. Our friends who are in various stages of treatment and recovery
5. Our friends whose children didn’t survive
6. Other families who are facing uncertainty

Sunday, June 27, 2010 2:57 PM CDT

We spent yesterday morning waiting, waiting, waiting to change rooms. Hospital time has its own schedule – there’s the word on the street that something might happen, then there’s the confirmation that it’s definitely going to happen and ‘the orders are in’, and then the wait before it actually happens. It doesn’t matter which hospital you’re in, that’s the schedule. We had nothing else to do though so it wasn’t too annoying. Hannah now has a nice room on the 6th floor with a nice view of the mountains AND a private bathroom! She wanted to clean up yesterday but the PICU only had one shower for patients and no chair. This bathroom is sized for a three year old though so we feel like giants! We got her hair washed and she was able to clean around the IVs, stitches, and cast.

The surgeon was in this morning and he still thinks that her mouth looks great. Here is a description of how they did the repair: They moved some nerves around on the right side of her face and created tunnels for the veins. To get her mouth ready, they cut around the opening of the hole (if you feel the roof of your mouth, the hole was the entire raised part) and sewed it back onto itself to create fresh tissue to apply the graft. Next they took the skin from her left forearm and stitched it over the opening to keep the graft from being able to lift up into her sinuses. Next was the graft of the tissue and veins. The vein and artery were ‘threaded’ up through the bone above her front teeth (under her nose – they shaved some bone and drilled a hole) and then tunneled behind her cheek to connected them to an artery and vein in her neck. She has three visible cuts, one on her cheek where the smile line is, and two on her neck. There are stitches under her upper lip, and of course the three layers in her palate. They stitched the tissue all around her palate. Her palate will always be soft because there is no bone or cartilage there. It’s up higher than I thought it would be so that helps with her speech. She still has some sounds that are difficult but she doesn’t have great muscle control yet because of the surgery and the swelling. Oh, after the graft to her palate they had to ‘harvest’ skin (nasty term!) and cover the site on her forearm where they took the tissue.

Moving forward we are watching for any signs of the grafts going bad (the vein and artery in her neck, her palate, and her forearm), any signs of infection in those areas plus her thigh (donor site). With a 360 degree graft they are also on the lookout for any small fistulas (small holes that develop), but they can repair those if we find them early enough. Her thigh is described as “road rash” but it’s in a nice rectangle shape and there isn’t any gravel in it! They have changed the dressing on her thigh several times because it keeps bleeding and leaking out. The doctor is going to change the cast on her arm to a splint tomorrow. It’s important to keep the pressure on the ‘donor site’ (sounds like something from a type of movie I don’t like to see!). I learned how to give shots, run IVs, change feeding tubes, and draw and administer IV medications, so I guess I’m going to add skin and tissue graft care. It is really too bad I didn’t go into medicine! I could get paid to do this stuff instead of paying out and doing it on an amateur basis!

So, the food. She will be on a puree diet for the next 2 to 3 weeks depending on how her mouth is healing. We convinced her to try French toast after the failed mac & cheese and frothy cream of chicken soup fiasco on Wednesday night. She decided it wasn’t too bad and she thinks that she just might be able to survive this. The French toast was more like cream of wheat with a good flavor so she went out on a limb and had chicken nuggets for lunch and a turkey burger with bun for dinner. The food either has the consistency of mashed potatoes with a flavor or batter. She had a blueberry muffin for breakfast and it was like eating batter without the raw eggs. We’ll see how this pans out once we get home!

We had company this morning so that helped pass some time. Bob’s sister came by before she went back to Illinois, and my cousin and his daughter stopped by on their way to the mountains. There is going to be a kid’s concert outside this afternoon. Hannah said she’d go, but she doesn’t think it’s going to be her type of concert. At least she’s prepared! We will probably walk around on some of the paths they have. It is strange for me to remember that she can walk anywhere. When she was in treatment she had to wear a mask everywhere and didn’t have the energy to walk very far. I see families here that everyone knows and I can tell that this is their “home”. I remember being one of those families and this time I just want to be anonymous and not set up housekeeping. I have made friends with some of the staff and we are going to share some ideas, but I think of that as work related. We aren’t staying! As a matter of fact we’ll be leaving soon!

God has given us both his promise and his oath. These two things are unchangeable because it is impossible for God to lie. Therefore, we who have fled to him for refuge can take new courage, for we can hold on to his promise with confidence. This confidence is like a strong and trustworthy anchor for our souls. It leads us through the curtain of heaven into God’s inner sanctuary. Hebrews 6: 18-19

Please pray for:
1. The grafts to remain healthy and continue to heal
2. No complications
3. The results to be what Hannah wants
4. Hannah to meet her goals for the day
5. Our friends who are in various stages of treatment and recovery
6. Our friends whose children didn’t survive
7. The other families who are facing uncertainty

Saturday, June 26, 2010 9:23 AM CDT

We are in a bit of a holding pattern as far as changing rooms is concerned. The good news is that she has been released from the PICU, the bad news is that there isn’t a room available on the floor the doctors want her moved to. She’s not complicated, just unique. This isn’t a surgery they have done here before. They do the flap surgery, just not the flap into the palate. The surgeons have done this on adults but kids rarely need it. We did have to move rooms at the spur of the moment last night. I think that they had assigned our room to another surgery patient when they thought Hannah was getting moved. It wasn’t a big deal and we actually ended up with a better room. This one is the same size, but it has a view of the mountains and it’s only four rooms down from the 1 bathroom available for parents. I would still prefer the regular room with a private bathroom, but we will take what we can get. We understand how hospitals work and there aren’t always rooms available.

I am amazed at how well Hannah is recovering. It is so encouraging! She walked around the unit yesterday morning. She was pushing her IV pole and the lines were coming out of her feet, so it was more of a shuffle, but it’s a great sign of how well she’s doing. After her walk she sat on the couch/parent bed and got on her computer for a few hours. She also tried to eat. A pureed diet is just gross! She ordered macaroni and cheese for dinner and it was foamy! Next she tried cream of chicken soup and it was foamy! Really, why put soup through a blender? She settled on a smoothie. She is also drinking water pretty well so hopefully the IV fluids will be stopped today. She used her PCA button a lot last night and occasionally during the day, but she wants to try to use a liquid pain med for the breakthrough pain. She transitioned to a scheduled oral pain med on Thursday. They did take her off the oxygen during the day but she needed it again after she went to bed last night. I’m sure she won’t need it during the day though. Her speech is getting better too. There are a few sounds that are hard for her pronounce, but she is clear and easy to understand. This was one of my fears, that she wouldn’t be happy with the outcome. On the down side she is itchy (probably from the pain med), her face hurts (not as bad though), and her arm bothers her a lot (pain, the draining and the process of “stripping the vacuum dressing, and it’s itchy). These are all temporary and part of the recovery process.

The surgeon and his assistant came in last night and gave the okay to check the blood flow with the dopplar wand every 4 hours so she got better sleep last night. They pulled the drain in her neck but she still has a lot of drainage coming from her arm so that one is still in place. I think they said that they would change the dressing on her thigh today. I hope so, it’s looking pretty gross. You know those plastic squeeze toys with liquid in them? That’s what this looks like, only it’s her leg and blood. She hasn’t had any pain from it, but I’d like to see it cleaned up. Weekends in hospitals are more like holding patterns so we are planning to just bide our time. It’s good that she is being monitored and all of her medical needs are being taken care of (and we have a view of the mountains).

Hannah got several cards from people at church yesterday and a couple of her friends. It is so nice to see that people are thinking of her. We are counting our blessings. She may have had one of the longest surgeries, but she is on the fast track of recovery. We measure our life by the content not the circumstances. We’ve had our share of bad circumstances, but we have the best content! I think that what your life is really about are the relationships you have with your family and friends. The love and caring that we share with others really does supersede the temporary events of our lives. We are grateful that you are in our lives. If you are reading this, you care and it matters to us.

God loves you and has chosen you as his own special people. So be gentle, kind, humble, meek, and patient. Put up with each other, and forgive anyone who does you wrong, just as Christ has forgiven you. Love is more important than anything else. It is what ties everything completely together. Colossians 3:12-14

Please pray for:
1. The grafts to remain healthy and continue to heal
2. No complications
3. The results to be what Hannah wants
4. Hannah to meet her goals for the day
5. Our friends who are in various stages of treatment and recovery
6. Our friends whose children didn’t survive
7. The other PICU families who are facing uncertainty

Friday, June 25, 2010 9:53 AM CDT

I’m starting this update before the surgeon has been here to look in Hannah’s mouth again. He stopped by last night at about 10:30 after another long surgery. The right side of Hannah’s face had swollen some so he was pushing around a lot which caused more pain. Hannah had been putting an ice pack on it but he doesn’t want her too. No pressure on that side or cold to restrict the blood flow. It makes sense, but 1.) I wish we would have known that sooner and 2.) after all of the pushing and poking Hannah was in more pain and there would be no ice to comfort her. He ordered a steroid to help with the swelling. A few hours later Hannah was itching, restless, and extremely hot. The nurse and I rearranged pillows, placed ice packs on her back and sides, redid her hair, and helped reposition her…. This morning we figured it was probably a reaction to the steroids but at 2:00 AM you’re not thinking like that. Not that knowing the reason would have changed how she felt. She did get a Benadryl chaser in her IV so I think that our heroic efforts plus the med let her sleep for a while.

The nurse told us this morning that she thinks the back of the graft looks a little less pink so she put a call in for the surgeon’s to try to get an early morning look, just to be safe. The blood flow still sounds good. As a mom, I’m just hyper-sensitive because when the doctor was feeling her face last night he mentioned the swelling might be due to a small blood clot. So, blood clot plus change in color of the graft equals anxiety. The surgeon works here and across the street at the adult facility. I do realize that they can’t be in two places at the same time so we will wait and see. If we don’t see the surgeon before I post this update, I’ll add a note later to let you know what he says.

Hannah had a progressively better day yesterday. She is more mobile and sat in the chair 3 times and is now able to get out of bed to go to the bathroom. Small victories. She did eat a vanilla shake even though she’s not hungry. It’s part of the recovery! Yesterday we were told that they wanted to do some dressing changes. The drain on her arm is still draining and leaking and making a mess, the drain on her neck isn’t putting out anything so maybe it can come out, and the dressing on her thigh needs cleaned up. She’s been out of bed already this morning, but walking is difficult mostly because of her lines. She has an IV in each foot with lines coming out, two drains with tubes and bulbs catching “the stuff” on her neck and arm, and various monitors. She also has the oxygen, but she is totally annoyed with it in her nose and took it out. Her oxygen sats are good so I’m sure they’ll turn that off today.

We are settled in for another day. I am waiting for the surgeon, the PICU doctors to round, and the plan for the day. Oh, and the answers to some of my questions! Typical hospital routine. Thanks for checking in on Hannah. I don’t think people realize how much they help by sending words and prayers of support. It lifts our spirits which gives us energy and helps carry us through the day (and night).

So the surgeon was just here and he said that she looks great! And, we have a tentative plan for getting out of here. To a regular room today, if there is one available, do some “hanging out” over the weekend, sutures out on Monday, and changing her cast to a splint on her arm. We may be able to be discharged to the Ronald McDonald House on Monday and then go to the clinic on Wednesday. If all is well, we might be able to go home then! We would need to come back for another follow up in three weeks and then the doctor’s former partner, who now works at CMH, can continue with the follow up care in Kansas City. That is a plan we can live with!

And may the Lord make your love grow and overflow to each other and to everyone else, just as our love overflows toward you. 1 Thessalonians 3: 12
Please pray for:
1. The grafts to remain healthy and continue to heal
2. No complications
3. The results to be what Hannah wants
4. Hannah to meet her goals for the day
5. Our friends who are in various stages of treatment and recovery
6. Our friends whose children didn’t survive

Thursday, June 24, 2010 9:56 AM CDT

Yesterday was a normal day in the hospital. I’m kind of amazed at how we have fallen back into the hospital roles and routines that we had before. I am trying to do things differently because I have flashbacks to treatment times and that brings back emotions that don’t belong here. I find myself going through the motions that were our life for so long (arranging pillows to make her comfortable, standing in the circle of doctors during rounds) and I have to remind myself that cancer is in the past. The horrible fears of an unknown future aren’t a part of our life anymore, but that’s what keeps bubbling up in my mind. Some emotions become engrained with certain actions and even smells, so now we just have to retrain ourselves.

Yesterday Hannah had a pretty good day. Occupational therapists came by to put her arm in a soft cast. This is to keep pressure and restrict movement on her forearm. They removed an artery and a vein so her whole forearm is affected, and they removed tissue (4cm x 2cm) from near her wrist. They used the tissue (not the outer layer with skin) to create a new palate. It will eventually tighten up a bit and be a flat palate, but right now it kind of hangs down and is swollen. Hannah said it feels like she has bubble gum in the roof of her mouth.

Her face started to swell and bruise a bit yesterday and overnight. She says that her neck hurts the most. They had to tunnel the veins down to connect them to the existing vein and artery that run down her neck. The blood flow is what they are really watching because it is keeping the tissue in her palate alive. So, they continue to do the hourly listening for the blood flow (at 2 AM, 3 AM, 4 AM, etc – brings back memories of eye drops every hour during a chemo treatment) and the needle stick every 6 hours. A surgeon was in at 3:00 AM to stick a needle in the roof of her mouth to check for blood return. Luckily, though, she can’t feel that. She is just being woken up constantly. Needless to say, her patience is a little thin today!

The surgeon was in at 6:30 AM to look her over. They are pleased with her progress and lack of complications! Hannah’s goals for today are to get out of bed and drink some liquids. She will get a pain consult because she is still having a pain rating of 7 – 8 with the continuous pain drip and the PCA button (she can give herself additional doses). Hopefully having her get out of bed will help with that. We are going to work on getting her on oral meds. They expect her to get out of PICU on Friday or Saturday and then she will go to a regular room for a few days. Hannah still has the 2 drains and is on IV fluids and an antibiotic. When the drains are pulled she should get off the antibiotic. Her temperature has crept up a few times but not to the point of concern. She is still on oxygen so they are bringing her the lovely spirometer. She had a few words about that but it doesn’t change the fact that she’s still going to have blow into it. The wound on her leg was leaking so we got that cleaned up. I think we are ready for the day.

Bob’s younger sister is going to visit today. Hannah is happy that Sarah is coming but she also wants to rest when she can. I guess she’s feeling good enough to complain and we know that’s a good/bad thing! Yesterday when Hannah would say something sarcastic the nurses couldn’t understand her, but she is much clearer with her speech today and has already had the nurses laughing (and me cringing). Hannah is moving forward with her recovery.

This is the verse we have on the Hannah bands from when she was in treatment. We had no idea at the time that the endurance is needed long after the treatments end.
He gives power to those who are tired and worn out; he offers strength to the weak. Even youths will become exhausted, and young men will give up. But those who wait on the Lord will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:29 – 31

Please pray for:
1. The grafts to remain healthy and heal
2. No complications
3. The results to be what Hannah wants
4. Hannah to meet her goals for the day
5. Our friends who are in various stages of treatment and recovery
6. Our friends whose children didn’t survive

Wednesday, June 23, 2010 8:59 AM CDT

Hannah’s surgery finally ended at 12:30 AM (MST). It was 17 hours from the time of induction (started putting her to sleep) until they finished stitching her up. She didn’t have any complications and physically remained stable the entire time. We were the second family into the surgery area on Tuesday and we shut the place down on Wednesday morning! We were so grateful to have the private room to spend the day in. My friends and family kept me company on the computer and with texting. An operating room nurse called us every hour (we had 2 shifts of nurses) with updates which really helped with the anxiety. It was a little unnerving when the amount of time expected to complete each phase kept getting extended! I always say that the one thing we don’t have to worry about is that time moves forward no matter what, but yesterday it sometimes felt like time was moving backwards.

Bob and I came up to PICU (Pediatric Intensive Care Unit) at 2:00 AM and Hannah looked better than we thought she would. She is still on a ventilator because they want to make sure that she doesn’t need to go back into surgery for any repairs. One of the doctors was in at 6:30 AM and the surgeon should be in around 8:00 AM (he’s still sleeping – we last saw him at 2:00 AM!) and he will give the okay to take her off the vent. Basically, she has the breathing tube down her throat and it’s helping move oxygen in and out of her lungs. She wasn’t completely sedated when we got back here last night and that was pretty rough. She was looking at us and trying to move her head and arms. They have cushions next to her head to keep it still and at the right angel, and her hands are restrained so she won’t accidently pull any of the tubes out. I just held her hand and she knew we were there, but I don’t think really understood what was going on. They have her on a continuous drip of fentynal and versed which helps keep her mildly sedated. She’s used it so much in the past that she’s fairly tolerant of it though.

Hannah has an IV in each foot for meds and blood draws. They don’t want any lines in her right arm in case they need to go back in and need additional tissue. Her left arm is in a splint because where they took the tissue and veins needs to have pressure on it and no movement. The Occupational Therapist should be in this morning to change the splint and make sure that there is enough pressure on the site. Her left thigh has a large bandage where they took the graft for her arm. She has a drain coming out of her neck and one out of her arm. These are draining well but not too much. It’s all a fine balance! Hannah had a chest x-ray last night at 2:00 AM to check the breathing tube location. It’s a little high so the nurse said it’s probably uncomfortable for her. They suctioned the breathing tube and her mouth around 4:00 AM. Hannah is trying to be compliant but she is gagging some and that seems uncomfortable for her.

The nurses have to check the status of the graft site in her mouth every hour for at least the first 72 hours. They put a Dopplar wand in her mouth to hear the blood flow. It sounds just like a fetal heartbeat. When the surgeon’s assistant was in this morning she used a syringe to pierce the NEW roof of Hannah’s mouth to check for blood and that was good. The surgeons will do this every 6 hours. So basically they are watching her mouth and arm to make sure that the grafts are still good. I’m glad to know that we will see a doctor every six hours.

As hard as this has been, it doesn’t even compare to when she had cancer or the fungal infection! I never, never, never want to go through that again! I’m physically and emotionally exhausted, but we have yesterday behind us and now Hannah is moving towards healing. Bob went to the Ronald McDonald House around 3:00 AM so he could get some sleep because we both knew that I wouldn’t really sleep in here and then I can nap during the day and he can be awake. The PICU rooms are all private and have a parent bed and a recliner. The nurses just changed shifts so we have a plan for the day. It will have its rough times, but we are doing what needs to be done to get out of PICU and off the ventilator. She looks amazingly well for all that she’s been through!

Thanks for reading, and praying, and caring; for sending us encouraging messages and accompanying us in spirit on this journey. You are making a difference in our lives. Never underestimate the power of those small acts; saying out loud the kind things you are thinking, texting back an encouraging word, signing in to let us know you are there. It all adds up to this huge tidal wave of love and kindness and it is carrying us through.

We also pray that you will be strengthened with his glorious power so that you will have all the patience and endurance you need. May you be filled with joy. Colossians 1:11

Please pray for:
1. Hannah’s safety during her recovery
2. The grafts to remain healthy and heal
3. No complications
4. The results to be what Hannah wants
5. Our friends who are in various stages of treatment and recovery
6. Our friends whose children didn’t survive

Tuesday, June 22, 2010 4:41 PM CDT

Five years ago today I drove Hannah to Children’s Mercy because I needed the doctor to tell us that her cancer wasn’t back. We had a vacation planned and we were done with cancer! Unfortunately, we didn’t get an all clear. Hannah’s cancer was back and we knew enough to know how bad it really was. You can look back in the journal for the updates around 6/22/05. I really don’t go back to that place in my mind very much. It was such a dark moment, but we know how that part of Hannah’s story ends! So, we live in the joy of life. Even the “bad times” aren’t really bad compared to where we’ve been.

Today Hannah took back the control that cancer takes away and walked bravely into an operating room to face a 12 hour surgery to reconstruct the damage that cancer did. I cannot express to you how proud of her we are. It makes me cry. As I sit here 8 hours into her surgery I think of how gracefully she has handled all that has been thrown at her. She does it with humor and honesty and the occasional sarcastic remark (well maybe a lot of sarcastic remarks!). But she does it. I pray, pray, pray that this surgery turns out like Hannah hopes it will.

The plan is for her to stay intubated (breathing tube in) for at least 24 hours. She will be in the ICU. While we all cringe, she asked if she would still be sedated and the doctor told her that she would be so she was okay. Then she informed the 4 doctors in the room that they may need to throw some meds her mom’s way! She understands that this is a really big deal, and she’s been nervous about it, but she hasn’t let that get in her way. She can’t understand why people tell her that she inspires them! Most of us find an excuse or avoid what’s hard to deal with (see first paragraph!), but she doesn’t just face it, she walks into an operating room and deals with it!

I was thinking this morning (if you know me, you know that I never stop thinking – or talking – or writing…) that I wasn’t sure if having done the surgery waiting thing more than 20 times is helpful or not. If having gone through the cancer thing and putting this surgery in perspective, is helpful or not. We’ve done it – we have perspective, but then I think I would have rather just endured one surgery instead of gaining the perspective. I’m grateful that we don’t have cancer looming over our heads right now. In the past we had the surgery AND cancer to deal with! Now we only have one really long surgery and the recovery and I know that this is much better. I don’t always have the answers to my questions! This is the life we’ve been given so I guess we’ll just deal with it.
Thank you to everyone who has jumped right back in to support us. Thank you to our new friends who have jumped in with loving support. You have no idea what a difference you are making in our lives. God really does make himself visible! I will try to add a quick update when she’s out of surgery and in a room. My hands might be too shaky or I might not have time. I will try though. I want you to be able to rejoice with us in the successful completion of today.

You will have courage because you will have hope. Job 11:18

Please pray for:
1. Hannah’s safety during surgery and recovery
2. Guidance for the surgeon
3. No complications after the surgery
4. The results to be what Hannah wants
5. Our friends who are in various stages of treatment and recovery
6. Our friends whose children didn’t survive

Monday, June 21, 2010 11:21 PM CDT

Monday, June 21, 2010
I thought that since we are asking you to join us for the rough parts of Hannah’s journey we should share the good stuff that happens too, and we had a good day! We got to Georgetown, CO on Sunday night so we could have a fun day before heading in for surgery on Tuesday. Hannah had decided that she wanted to ride ATVs so Bob made reservations for a 2 hour ride. I don’t know why she chose the ATVs but it’s something we’ve never done before so it was definitely an adventure. I have to say that it was a great way to keep my mind off tomorrow’s surgery! We got a quick lesson, rode around a parking lot a few times, rode over a “practice course” and we were off! I did not feel confident, but I figured that they probably hadn’t had any fatalities because they were still in business. My mind couldn’t wander to the surgery because I was too busy trying not to tip over or fall off the mountain. We made it to some beautiful spots and it turned out to be a lot of fun. I decided that the sound of the engines was music to my ears because when we’ve gone horse back riding I couldn’t walk the rest of the day, and when we hike the sound of my heart exploding is nearly as loud as the engines! We’ll do it again.
We still had time in the afternoon so we drove to the summit of Mt. Evans. We didn’t want to get to the hotel too early because then all we’d do is think about tomorrow. The road to the summit was almost wide enough for two vehicles and it had switchbacks that turned so sharply that all you could see was sky (no road, nothing!). The summit was 14,200 feet and it was an amazing view! The fear of the edge of the narrow road was also a good deterrent to keep me from worrying about tomorrow. I was worried about today, but not tomorrow! I guess that’s a good thing.
I will try to stay updated but I have no idea how Hannah will be doing and if I’ll be able to update regularly. We really appreciate all of the support we have gotten so far. I’ve been on the side of waiting for an update on someone else, and your prayers really do get us through. We have to be at the hospital at 5:30 AM (Mountain Time) and she is scheduled for surgery at 7:30 AM. The surgery should last 10 – 12 hours….. Then it will be time to recover and move forward.

But it is good for me to draw near to God; I have put my trust in the Lord God and made Him my refuge, that I may tell of all Your works. ~Psalm 73:28

Please pray for:
1. Hannah’s safety during surgery
2. Guidance for the surgeon
3. The results to what Hannah wants
4. Our friends who are in various stages of treatment
5. Our friends whose children didn’t survive

Tuesday, May 25, 2010 2:42 PM CDT

May 25, 2010

I guess it’s time to update again! Hannah and Jacob are home from school for the summer. I’ve had a lot of things I wanted to update about, but I kept thinking I’d get to it “next week” and now the semester is over! I love how the house went from quiet and clean to cluttered and noisy overnight.

Hannah is doing really well. She made it through the year without any major infections! It seems the immuglobin infusions really do work. She hates the 4 needles in the abdomen every week though, and the cost is outrageous, but the fact that she has been healthy is worth it all. At least I think so. Did I mention she hates sticking herself?

The biggest news on the medical front is that Hannah will be having her palate reconstruction on June 22nd. We weren’t able to find anyone in the area that could do it, but one of the surgeons from Children’s Mercy referred us to a doctor in Denver who has experience with this kind of surgery. Hannah and I flew out to Denver in April for a consultation and she decided that she wants to have the surgery. It’s a 12 hour surgery with an ICU and inpatient stay of about 10 days. They will take a flap of tissue and veins from her left forearm, graft the tissue into the roof of her mouth, tunnel the veins through the back of her mouth and graft them to her carotid artery and jugular vein in her neck. Then they will take skin from her thigh and graft it onto her forearm. She is really ready to have the huge hole in her mouth closed! Bob and I have medical leave time set up so we can both be there. So far, I’m the one who is having the anxiety. Hannah has the best attitude and I am trying to hold up my end of the deal. After we talked to the surgeon I asked Hannah how she felt about it and she replied, “Well, it’s just a summer of pain and recovery, and then I’ll be fine for the rest of my life.” I’m glad she’s brave.

In January Hannah got to meet some of her blood donors. The Community Blood Center and the Leukemia & Lymphoma Society partnered to bring awareness about blood donation month. Since Hannah had over 200 units of blood products they thought it would be a good story about the real life-saving gift of blood. They were able to contact most of the 180 different donors and several of them braved a horrible snow storm for the event. Hannah did a great job of speaking to several news reporters and I spoke to the group. It was really overwhelming to be able to say thank you face-to-face to those whose selfless act actually helped save her life. In March we spoke at the Community of Giving ceremony honoring blood donors. If you donate blood in the KC area, you can see the video they made from the January event. If you are able, please donate blood! It really does save lives.

Hannah was busy at school with her sorority and SAC (Student Activities Council), and of course homework! She is still having difficulty sleeping so she has been to the sleep clinic and will have some more tests done in August. There is research that some cancer survivors have sleep problems after treatment. Hannah would love to be able to sleep well and feel rested.

Jacob just finished his junior year and is already getting ready for football in the fall. I don’t know what Bob and I are going to do when he isn’t playing football anymore. Bob and I have both been busy with work. I went back to school in February so that is using up any extra time I had. I am still working at the church and getting ready for another VBS in June. Our Relay For Life is July 9th. Hannah will be spending the summer recovering from surgery. Bob and I are looking forward to having the kids around for a few months. We did get used to the clean house though! We all worked hard to get to this place in our lives and we are truly loving every moment of it.

I pray that God, who gives hope, will bless you with complete happiness and peace because of your faith. And may the power of the Holy Spirit fill you with hope. Romans 15:13

Please pray for: …
1. Hannah’s surgery on June 22nd, the days leading up, and the following days of recovery.
2. Hannah and our friends who continue to fight the side effects of their treatments.
3. The families of our friends who did not survive.

Friday, December 4, 2009 8:22 PM CST

Hannah is almost done with her first semester of college! Once again, “Where does the time go?” Hannah and Jacob will be home for the winter break after Dec. 10th. We are looking forward to seeing a little more of them.
Hannah is doing pretty well at college. She joined the Alpha Chi Omega sorority and loves her new “family”. During a “fun water balloon fight” she got pushed into a pond and sprained her ankle. She spent a few weeks in a boot hobbling around but we had the attitude that it was just “regular stuff’. It wasn’t easy to get around campus on crutches or in a boot, but next to cancer it’s was a piece of cake. (That’s what I said; not what Hannah said.) She was a Student Athletic Assistant this fall but is trying to cut back on the hours she works because she has found out how much time it takes to study. College has been an adjustment but I think that’s how it is for everyone. Hannah has had to take on the responsibility of her health care but she’s managing. Medically, she is about the same. She is still having trouble sleeping and it’s even harder at college. She started doing her IgG infusions the week she moved to school. It consists of sticking 4 – 6 needles attached to IV tubing into her abdomen for a 2 hour infusion once a week. She really hates it! It has been successful in raising her IgG level but she still has a lot of GI issues that she was hoping would go away. We also got a shock with the first bill that came. The IgG costs $22,000 per month! Luckily, she’s still on our insurance but I’m already starting to worry about what she will do when she graduates. I’m sure it will all work out somehow. Right?
November 29th was the 4th anniversary of Hannah’s transplant. We are planning a night out for dinner and movies but it will have to wait until she’s home for Christmas. I feel bad that we didn’t do anything special on that day, because, honestly, it’s never far from my thoughts.
Amazingly, I uploaded new pictures!
We are looking forward to Christmas and getting to spend some time together. That’s the best gift of all – time together!

Faith means being sure of the things we hope for and knowing that something is real even if we do not see it… It is by faith we understand that the whole world was made by God’s command so what we see was made by something that cannot be seen. Hebrews 11: 1, 3

Please pray for:
1. Hannah’s health while she’s away at school.
2. Families whose children are no longer with them.
3. Families whose children are done with treatment but still worry every day

Saturday, August 29, 2009 6:45 PM CDT

Aug. 29, 2009

Hannah and Jacob both moved to Baker a couple of weeks ago. Hannah is a Student Athletic Assistant and helping with the volleyball team. Jacob is busy with football. Of course, they’ve both started classes and I’m sure they are spending the majority of their time studying! I know they are both happy and that in turn makes me happy. Bob and I are trying to get used to being home alone. It’s been over 20 years since we’ve had the house to ourselves. It’s the next stage in our lives and we know how lucky we are.

Hannah saw the immunologist and found out more about the IgG infusions. Hannah has Primary Immune Deficiency due to her chemotherapy and transplant. My hypothesis is that the Rituxan Hannah received after her relapse targeted her B cells (that’s good because that’s where her cancer was), after her fungal infection she was given Rituxan in experimental doses to keep her cancer at bay while she recovered from the infection. This depleted her system of B cells and then we harvested her stem cells for her eventual transplant. Her B cells may or may not have recovered but she got transplant chemo which totally wiped out her bone marrow and she was given her harvested cells to rescue her. What we didn’t think of (but didn’t really have a choice) is that the harvested cells didn’t have any B cells so now she doesn’t have any way to make them. Transplant wiped them out and we didn’t give her any back. I now understand what happens when you do experimental treatments – you find out the consequences later. However, we are eternally grateful for Hannah’s life so we wouldn’t have done it any other way. She has had some “system” failures due to the harsh and experimental treatments but so far there has been a treatment available to help correct them. She just incorporates everything into her life and keeps going!

Her infusions will be done at home or wherever she is (ie dorms) so the home health nurse came out last week to give her a lesson. The IgG is from blood donors and it’s the antibodies that tell your body to fight off infections. The infusions take about 2 hours. She has to stick 6 needles in her abdomen! The needles are at the end of IV tubing and the IgG is infused into the tissue below the skin and is then absorbed into the bloodstream. This will help her keep an even level of IgG in her bloodstream so hopefully she will start feeling better. The doctor said that she’s probably had viral infections constantly for the past few years because her body didn’t know to fight them off. She is really hoping this will help her sleep better too! She hasn’t been able to fall asleep easily or have restorative sleep since she was diagnosed (almost 5 years ago). Hannah has taken this all in with the same attitude she’s always had. Until it came time for her to poke the first needle in she didn’t think it was a big deal. She sat there with the needle in her hand and looked at her stomach and commented that, “Okay, now it’s a big deal!” She got it in on her second try and finished the next 5 without a problem. She also informed me that she will be doing this at school because, “I’m not going to be one of those kids who comes home from school every week.” It’s a good sign!

We are so grateful for this time in our lives. My dad finished his radiation treatments and is doing great. Bob and I are adjusting to our empty nest and looking forward to Saturday football games and seeing the kids. We know how good life is.

I pray that God, who gives hope, will bless you with complete happiness and peace because of your faith. And may the power of the Holy Spirit fill you with hope. Romans 15:13

Please pray for:

1. Hannah’s health while she’s away at school.
2. Families whose children are no longer with them.
3. Families whose children are done with treatment but still worry every day.

Saturday, July 25, 2009 10:15 AM CDT

Update:
Dr. Lewing called on Thursday to give us an update on labs. Everything except her IgG is fine. Her IgG level has dropped some more (“It’s drastically low”) so Hannah has an appointment with immunology on July 30th. The immunologist said that since we know why Hannah can’t maintain her IgG level (Rituxan plus transplant chemo) they don’t need to do any testing; just treatment. Apparently she can give herself injections instead of getting it by IV. This will work better while she’s at college, it will probably be a longtime (maybe lifetime?) need and it should help keep her protected. She will find out Thursday how often she will need these.
Here is a VERY BASIC lesson about IgG. IgG is an immuglobin which is a part of your white blood cells. There are a few different immuglobins that have different jobs. IgG is the part that has the memory to tell the white cells that there are foreign cells in the body and to go fight them. For example: if you get a cold, your IgG remembers that the virus that entered into your body is foreign and it will fight it off the next time it enters your body. When you get immunized or get a flu shot the IgG holds onto it so if that strain of flu or mumps tries to enter your body, the IgG tells your white cells to go fight it off and you don’t get sick. Without the IgG Hannah’s cells don’t know to go fight off the foreign invaders and she is more susceptible to getting sick. If she’s gets vaccinated, it will just leave her body…. So, with injections of IgG she will have help recognizing viruses entering her body. She still can’t get immunized while she gets IgG because it still leaves her body – that’s why she has to keep getting more. IgG is a blood product so when you donate blood they can extract it (somehow!) and it can be given to people like Hannah.
July 22, 2009
Happy Birthday Hannah! Today we celebrate the day you were born and stand in awe of the beautiful person you have become.
While Hannah was focused on the concert she was going to tonight, I have been trying to adjust to the fact that she’s a consenting adult. She had a hem/onc clinic appointment and a chest x-ray today. I was giving a presentation at work so I wasn’t going to be able to be with her, but since she’s now and adult she can sign herself in! I went to the clinics and gave them our new insurance information first thing this morning. Hannah signed herself in (a tough thing for a mom after all we’ve been through) and got her x-ray without any trouble. She came up to where I was giving a presentation to some nurses and then went to her hem/onc appointment. I went over when I was done and she was chatting away with Dr. Lewing. She had a list of questions and concerns and had that taken care of when I got there. We didn’t wait to get all of her labs but what we got was good! I will get the rest of them tomorrow as well as the results of her chest x-ray. I don’t expect that anything out of the ordinary will show up. Dr. Lewing does want Hannah to start seeing an immunologist. Hannah’s bone marrow still hasn’t fully recovered so she feels that they will be able to follow her and do some testing to see if she can be immunized again. She has good white blood cells but still no B cells and she can’t maintain her IgG level. The only other thing that still bothers her is that she has trouble sleeping. She doesn’t have to go back to hem/onc until February!
Tonight Hannah is at a concert with the We Will group from the Leukemia Lymphoma Society. They went to see The Fray and Jack’s Mannequin. Normal stuff! We will celebrate her birthday on Saturday. Last week she went to Colorado with her Youth Group and had a great time. They went rafting and she jumped off a cliff! The old saying, “Well, if so & so jumped off a cliff, would you?” was answered; Yes! Oh, brother! She is a nanny this summer for 6 and 8 year old sisters in Olathe. It’s been a different summer because both kids (they’ll always be my kids; right?) are working full time. They will head off to college in about 3 weeks. Bob and I are trying to wrap our heads around the fact that Hannah turned 18 today, Jacob turns 21 in November and they will both be at college next month. It’s all good; we’re just trying to adjust to the fact that our family is growing up. I don’t know how but it snuck up on us!
My dad is doing well. He has a few more weeks of radiation. He is scheduled to finish August 7th when Tammy and the kids get here from London. We still have a lot planned! Life is good and we know it!

Make your light shine, so that others will see the good that you do and will praise your Father in heaven. Matthew 5:16

Please pray for:
1. Gratitude for growing up
2. Families whose children are no longer with them
3. Families whose children are done with treatment but still worry every day
4. My dad and mom

Wednesday, July 22, 2009 10:14 PM CDT

July 22, 2009
Happy Birthday Hannah! Today we celebrate the day you were born and stand in awe of the beautiful person you have become.
While Hannah was focused on the concert she was going to tonight, I have been trying to adjust to the fact that she’s a consenting adult. She had a hem/onc clinic appointment and a chest x-ray today. I was giving a presentation at work so I wasn’t going to be able to be with her, but since she’s now and adult she can sign herself in! I went to the clinics and gave them our new insurance information first thing this morning. Hannah signed herself in (a tough thing for a mom after all we’ve been through) and got her x-ray without any trouble. She came up to where I was giving a presentation to some nurses and then went to her hem/onc appointment. I went over when I was done and she was chatting away with Dr. Lewing. She had a list of questions and concerns and had that taken care of when I got there. We didn’t wait to get all of her labs but what we got was good! I will get the rest of them tomorrow as well as the results of her chest x-ray. I don’t expect that anything out of the ordinary will show up. Dr. Lewing does want Hannah to start seeing an immunologist. Hannah’s bone marrow still hasn’t fully recovered so she feels that they will be able to follow her and do some testing to see if she can be immunized again. She has good white blood cells but still no B cells and she can’t maintain her IgG level. The only other thing that still bothers her is that she has trouble sleeping. She doesn’t have to go back to hem/onc until February!
Tonight Hannah is at a concert with the We Will group from the Leukemia Lymphoma Society. They went to see The Fray and Jack’s Mannequin. Normal stuff! We will celebrate her birthday on Saturday. Last week she went to Colorado with her Youth Group and had a great time. They went rafting and she jumped off a cliff! The old saying, “Well, if so & so jumped off a cliff, would you?” was answered; Yes! Oh, brother! She is a nanny this summer for 6 and 8 year old sisters in Olathe. It’s been a different summer because both kids (they’ll always be my kids; right?) are working full time. They will head off to college in about 3 weeks. Bob and I are trying to wrap our heads around the fact that Hannah turned 18 today, Jacob turns 21 in November and they will both be at college next month. It’s all good; we’re just trying to adjust to the fact that our family is growing up. I don’t know how but it snuck up on us!
My dad is doing well. He has a few more weeks of radiation. He is scheduled to finish August 7th when Tammy and the kids get here from London. We still have a lot planned! Life is good and we know it!

Make your light shine, so that others will see the good that you do and will praise your Father in heaven. Matthew 5:16
Please pray for:
1. Gratitude for growing up
2. Families whose children are no longer with them
3. Families whose children are done with treatment but still worry every day
4. My dad and mom

Friday, April 24, 2009 8:26 AM CDT

Friday, April 24, 2009

I guess that not updating doesn’t actually keep cancer out of our lives. Hannah has been doing really well and we continue to be grateful for her health. She is still having problems with her IgG level. We had her level drawn in March and it had gone down again. Her doctor is checking with immunology to see if she can get a “dead” vaccine to see if she produces antibodies. We will continue to “wait and see”. She feels good most of the time.
Hannah is getting ready to graduate! I get emotional just thinking about it, but in the best way. Thinking back to where she was her freshman year this is beyond what we could even dream of! She has been busy filling out scholarships and spending time with her friends. She went to prom with a friend from church and has gotten to be “normal” which has been her biggest dream. Graduation is on Saturday, May 16th and we will be having her Open House on Friday night from 6:00 - 9:00. If you are in the area, you are invited to come by. You can email me for directions, if you haven’t been out here before. We are thrilled to be able to celebrate good news!
My dad was recently diagnosed with prostate cancer so it seems the cancer monster is still lurking. They are meeting with the doctor again to make final plans for treatment. Surgery isn’t an option because of his heart and all the meds he’s on, but luckily there are other options with excellent outcomes available. My parents have the best attitudes of anyone I know. They are facing this with the same attitude. I will keep you posted (more frequently than every 6 months!)
My heart is completely broken to post that our friend, Sam Weeks, found his cure in heaven on Sunday, April 19th. We became friends with Sam and his family soon after Hannah was first diagnosed. Sam has since had another diagnoses and then a “treatment related” diagnosis. He underwent a bone marrow transplant and then had complications and had a second transplant but his body had just too much treatment and couldn’t recover. He was just days short of turning 18. I’ve never seen anyone fight so hard. Please continue to pray for his family and his girlfriend.
We are once again raising funds for the Relay For Life. We have the ability to change the world! If there was enough money for research, there would be treatments for cancer that aren’t so hard on you that the treatment takes your life. I am so tired of the pain and suffering of so many. I will post the link to our site on here soon. We are going to get ready to go to Sam’s funeral now.

I have told you all this so that you may have peace and trust in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. John 16:33

Please pray for:
1. Gratitude for Hannah’s graduation
2. Families whose children are no longer with them
3. Families whose children are done with treatment but still worry every day
4. My dad and mom

Saturday, December 20, 2008 9:59 AM CST

December 2008

Merry Christmas and Happy New Year! I hope you are busy and enjoying the frenzy of the season! I can’t help but remember back to Decembers 2004 & 2005 when we spent months in the hospital. Having busy schedules is a good sign. We wish you a healthy 2009 with moments of extreme joy, days of boring routines and an attitude that keeps your stress in perspective. (The boring routine days are really the good stuff when nothing is bad so enjoy them!)
Hannah is done with her fist semester of her senior year! She had her 3 year post transplant testing this month. Most everything is within the normal range and she really is doing great! The only “problem” is her bone marrow is working at about 50% and she still isn’t producing B cells. They think that this is because of how harsh her treatments were and the fungal infection before transplant. The doctors don’t know if / when it will fully recover. The biggest problem this presents is her inability to get immunized and her platelets have remained on the low end of normal so she bruises easily which causes anxiety about relapse… For all that she’s been through these are pretty minor problems and we know how to recognize a “good problem” when we see one (or two)! We aren’t complaining; we’re celebrating!
I posted some new pictures and I’m trying to post a video I created - this is way beyond my scope of technical abilities! But, it won’t happen if I don’t try and who knows, I may acquire a new skill. (I think I did it! Check out the link at the bottom) Our family chaired the Children’s Mercy Cancer Center Holiday Hero campaign this year. This is a fundraiser for the cancer center which provides so much support to families while their children are in treatment as well conducting research at CMH. I will post the letter we wrote in the journal. Here is the address (you may have to copy and paste) if you are interested in learning more about it. http://www.childrensmercy.org/Content/view.aspx?id=4392
Please pray for several friends. Sam is facing his 3rd cancer diagnosis and will have a bone marrow transplant in January. This cancer is a side effect of previous treatment. Cancer and the treatments are ugly and cruel. Katrina who had her 1st transplant a few weeks before Hannah and relapsed last year and underwent a 2nd transplant is still dealing with several issues. Our friends who are still recovering; physically and emotionally. There are so many new families who are in the midst of treatment and just trying to get through each day who need prayers for hope and healing. Please continue to pray for the families who are spending Christmas without their loved one. Pray for a cure! Childhood cancer research receives the least amount of funding so we need to raise awareness to help put an end to this disease that takes so much.

May the Lord bless you and protect you. May the lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace. Numbers 6:24-26

Please pray for: …

1. Thankfulness for good test results.
2. Sam and his family.
3. The families whose children didn’t survive. They need prayers every day

Saturday, December 20, 2008 9:37 AM CST

Children's Mercy Hospital Cancer Center Holiday Hero letter

November 2008
Dear Friends,
On August 3, 2004 Hannah won first place in the 13 year old age division for Olympic Style Weightlifting at the Jr. Olympics. She started the 8th grade two weeks later. On September 7, 2004 she was diagnosed with Stage IV Burkitt’s Lymphoma. Our lives had gone from “dreams come true” to a nightmare in a matter of days. Hannah received 10 rounds of chemo over the next 9 months but her cancer still came back. In June 2005 Hannah was enrolled in a clinical trial to fight her recurrent cancer. This harsh treatment led to a life threatening fungal infection in her sinuses and lungs. Like many cancer families we became familiar with several different specialists at Children’s Mercy Hospital. New drugs were used to try to keep Hannah’s cancer in remission while she recovered from her infection. Miraculously Hannah survived and a few months later she was ready for the next battle. Hannah’s doctors petitioned for her to receive a compassionate use exemption for an adult experimental drug to help in the harvest of her stem cells for an eventual transplant in November 2005. Hannah was finally released from the hospital in February 2006. Over the course of Hannah’s treatment she had dozens of surgeries, almost 200 units of blood products and had spent more than 300 days on 4 Henson. She returned to school as a sophomore having completed her 8th grade and freshman year at home through computer classes.
Today Hannah is a senior in high school and a member of the hospital’s Teen Advisory Board. She plans to go to Baker University to get her nursing degree so she can come back to work on 4 Henson. Hannah would never have chosen to be diagnosed with cancer, but during the course of her treatments she was treated with such compassion and care by the doctors, nurses and staff that she is choosing to return to Children’s Mercy.
Nobody is ever prepared to hear that they have cancer or worse that their child has cancer. We weren’t. The Children’s Mercy Cancer Center is always ready to help families find their way out of the nightmare of childhood cancer. Unfortunately, children are diagnosed with cancer every day. We owe the staff and the Cancer Center unending gratitude for not only saving Hannah’s life but preserving her spirit. We continue to follow Hannah’s lead and are choosing to give back so that the families that come after us will also receive the best care available. So that each family will be greeted with hope and guided through the world of childhood cancer with unparalleled compassion and high quality care. You can be a part of that hope. We are asking you to become a Holiday Hero by making a tax-deductable gift to the Children’s Mercy Cancer Center. You can honor or remember someone special by sending your gift in the enclosed envelope. Show your support to these families and the wonderful staff at Children’s Mercy Hospital. Give HOPE.
Sincerely,

Bob & DeeJo Miller Chairpersons 2008 Holiday Hero Campaign

Hannah Miller
Co-chairman & Pediatric Cancer Survivor

P.S. By making a gift of $35 or more, your Holiday Hero will be recognized in The Kansas City Star on Super Bowl weekend. Gifts of $1,000 or more will also be recognized in Children’s Mercy’s individual Circles of Giving recognition societies.

Friday, October 31, 2008 8:32 AM CDT

Friday, Oct. 31, 2008:

Happy Halloween! I have a few minutes so I thought I’d do a quick update. I need to update pictures because Hannah and I have both gotten our hair cut short. I cut mine and got some waves put in, Hannah got hers cut and used a flat iron on it! That’s about all that’s changed in the past month. Hannah is busy with school. She’s taking a CNA (certified nursing assistant) class at school and is still helping the school athletic trainer after school and at the games. She’s been dating too. I’m really trying to wrap my head around the fact that she’s going to college next year! It’s a great thing but now it seems that time is speeding up.
Hannah will have her 3 year post transplant appointments in early December. We have some friends whose children have had some disturbing labs so please continue to pray for the families whose children have battled cancer. As parents we all “get back to life” but sometimes there is a real struggle with feeling safe again. It doesn’t take much for it to consume our thoughts again. I’m meeting Nathan’s mom, Tammie, for lunch today. We try to get together once a month. Nathan would have turned 15 on Oct. 28th. Continue to pray for the families whose children didn’t find healing on earth. The friendships of parents who share this cancer experience is strong.
Last weekend we had a Life After Treatment conference to educate parents about what the future looks like for our children. Unfortunately the late side effects of such harsh treatment on growing developing bodies can be severe. Being educated about what to look for and the importance of being diligent through their entire life can help. There are a lot of organs that have been effected and sometimes the side effects don’t occur until many years later. Sometimes nothing goes wrong, but after having been told your child has cancer parents continue to walk on eggshells. Cancer Stinks!
I’m adding a link to a website called Parents Against Childhood Cancer (PAC2). They want to coordinate the efforts of the various childhood cancer organizations to bring more recognition to this disease. I still believe in the Relay For Life because I have adult friends and family who have battled cancer. I also believe that the cancer education the ACS does is a huge part in the fight against cancer. Having a child who had cancer and who has to live with the side effects I believe in the efforts of PAC2. There hasn’t been a new cancer drug for children in over 20 years! They use adult drugs and experiment with the dosages but there is pathetically little money designated for childhood cancer research. Hopefully with a concerted effort to bring awareness about childhood cancer that will change. Treatments will be more effective and cause fewer life long side effects. I encourage you to check out this site. If we don’t speak up, who will?

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” Jeremiah 29:11

Please pray for: …
Thankfulness for the regular stuff.
Our friends who are facing uncertainty.

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)
www.caringbridge.org/visit/jaxonburns (Jaxon’s site)

Thursday, September 11, 2008 9:33 PM CDT

Sept. 11, 2008:

*September is Childhood Cancer Awareness month - we never knew until Hannah was transferred to the oncology unit on Sept. 7, 2004
* 12, 500 children are diagnosed with cancer each year., and of those, 1 in 5, will not survive.
* One in 330 children will develop cancer by age 20..
* In the U.S. almost 3000 children die from cancer each year, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.
* In the past 20 years only one new cancer drug has been approved for pediatric use.
* Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.
* September is Pediatric Cancer Awareness month, which nationally goes largely unrecognized.
*Currently there are between 30-40,000 children being treated for cancer in the US .

I thought I better get this updated! We have been busy, busy, busy! We had our Relay For Life in July and raised over $88,000!! It was a wonderful night and we made a difference in the fight against cancer. Thanks to everyone who donated or attended a Relay. There are cures just waiting for funding to find them. Look back in the journal to read Hannah’s Fight Back speech. I’m leaving tomorrow for Dallas to attend the Relay For Life Summit so we can start planning for next year.

I guess a lot has happened since I updated last. Hannah turned 17 and started her senior year of high school. Where did the time go?! She is taking a CNA class (certified nurses assistant) this year and loves it. She’s applying to colleges and staying busy. Once again she’s helping the athletic trainer for football and volleyball. Hannah and Amanda had their senior pictures taken in August so it’s official - they’re not little girls anymore! I am so happy for both of them.

Medically, she’s doing well. We had her allergies tested and couldn’t figure it out. It seems she’s allergic to something she ate, but nothing showed up on the test. She had labs and a chest x-ray a couple of weeks ago at the hospital. Everything except her IgG levels were normal. She is going to get another IVIG infusion at the end of the month. It’s not an immediate need so she is going to wait for one of her days off. She seems to need this every 6 months. As we are nearing her 3 year anniversary since her transplant I’m hoping she will start producing this on her own. She is a little upset because this will postpone her immunizations again. It seems we are in some unexplored territory regarding when these counts might recover on their own. Experimental drugs, experimental doses, more experimental drugs, extra high doses of chemo, infections and being a teenager results in a lot of unknowns. Other than that everything is going well.

I recently started working 4 days a week at the hospital as a Family Centered Care Coordinator. I’m a parent on staff so I get to work with families as well as be a family voice in administrative meetings. I just stopped working my home job. I love what I’m doing at the hospital and I still work at church. Jacob is playing football at Baker again and of course going to classes. Bob is still working the day shift on patrol.

Hannah got to meet Lance Armstrong last week! Her nurse, Kristin, called to invite her to sit at the Pediatric Oncology Nurses Assoc. table (Kristin is on the board) and it turned out she and the other teens at the table got to meet Lance before the lunch and speech. He was speaking at a benefit lunch for the American Royal. It was really inspiring. We heard he’s coming out of retirement and Hannah said that he didn’t mention it to her! Ha ha! She also got his autograph for our friend Don. Don battled liposarcoma for almost two years before he found his healing in heaven on Sept. 5th. He was a beloved coach in Gardner and will be missed by so many. His wife Jan is my friend and she was Hannah’s teacher in 8th grade while she was fighting cancer. Please keep Don’s family in your prayers. There are a lot of families that are missing their loved ones every day. The anniversary of 9/11 reminds us of that.

God has given us both his promise and his oath. These two things are unchangeable because it is impossible for God to lie. Therefore, we who have fled to him for refuge can take new courage, for we can hold on to his promise with confidence. This confidence is like a strong and trustworthy anchor for our souls. It leads us through the curtain of heaven into God’s inner sanctuary. Hebrews 6: 18-19

Please pray for: …
Thankfulness for the regular stuff.

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)
www.caringbridge.org/visit/jaxonburns (Jaxon’s site)

Friday, July 4, 2008 10:03 AM CDT

July 4, 2008:
Happy 4th! What a beautiful day! One of the great things about today is that we can go back in our memories to remember many celebrations through the years. The regular days of the year all tend to blend together, but we remember the celebrations. I think back to my childhood and all the family get-togethers and realize how much love was present. When the kids were small and Bob and would choose to do some of the things that brought back good memories in hopes that our children would love their childhoods as much as we did. I’m glad we took time to just have fun. We have had times when we struggled financially but those times don’t really pop up in my memory. We have had some of the best vacations ever and many memories of family times and that’s how I define our lives. Moral of the story – the time spent away from family trying to make more money isn’t going to bring your family the joy that spending the time together will. I am still so grateful everyday. I know how blessed we are – not with things, but with the knowledge of the priceless gifts our family and friends. Thank you for being a part of our life. In whatever way you are in our lives you make it whole.
Okay, now that I’m done telling you how grateful we are I’ll update about Hannah! She had her oncology clinic appointment and it was uneventful and normal! The only thing that came out was kind of good news/bad news. Dr. Lewing thinks that the allergic reaction Hannah had could be a sign that her immune function is returning and we have no idea what she’s going to be allergic to. Cancer treatment does a wonderful thing of ridding your body of cancer but the short and long term side effects can be pretty harsh. Hannah got an epi pen to carry with her and an appointment with the allergist. The endocrine appointment was with a new doctor – changing appts was easier if we switched doctors so Hannah picked a female. She will now be seen at CMH South for these appts. They switched her estrogen dose (yippee) and we’ll go back in 4 months to check those levels. Finally we went to see the cleft palate plastic surgeon. Don’t read this if you have a queasy stomach. The surgery consists of “fileting” her tongue length wise and stitching the top flap to the roof of her mouth and leaving it for 3 to 4 weeks (attached at the top and bottom) before going back in to cut it apart. OMG! Seriously?! Is that what they’ve come up with? Believe it or not, Hannah wants to have it done! I’m going to do some checking around with some other hospitals to find out what their procedures are. I have a ton of concerns. The discomfort of it all bothers me, but that’s only temporary for a lifetime fix so I’m over that. We’ll see… (don’t you hate that expression?) Hannah thinks that next summer would be when she wants it done. She added that I couldn’t count that as her graduation present! Ha ha So, medically, she’s doing great!
Hannah has been speaking at Relay’s almost every Friday. Every time I see her standing in front of hundreds of people and telling her story I remember when they were trying to let us know that she wasn’t going to survive. When you look at her now you’d never know what she’s been thru. Have I mentioned how grateful I am?! Hannah has been volunteering at the ACS office about once a week. She spent a week at Baker attending the Kansas East conference church camp (Institute). She loved it. And, she’s still watching Lily and her brothers a couple of days a week. Lily is another miracle that by looking at her you’d never know what she’s been through. We love all of our “cancer friends”. They have become some of the richest friendships we have because we all became friends without any of the stuff that goes with our lives – just emotion and honesty and compassion. We all wish we’d never met because then our children wouldn’t have been sick, but if we had to take the bad we’ll take the good that came because of it. It has been great having Jacob home from college. We have had some good family times. Hannah got an early birthday present – Wii – so we all get competitive at night swinging at air! This Friday (7/11) is our Relay! Thanks for your donations – someone will be cured one day because of your dollars. Hannah is going to give the Fight Back speech at midnight. I’ll post her speech first, so you can go back in the journal to read it.
Enjoy the rest of your summer! Take advantage of the bad economy and stay home and rediscover what our forefathers knew – family time is priceless and cheap! Hug your kids (no matter how old they are; ask Jacob). Continue to pray for Don as he will have surgery (hopefully) soon, Sam, who finished treatment, Nick & Katrina, who are still recovering from transplants, Jaxon who is recovering from a liver transplant and chemo and the parents of these children. Remember the families who are no longer complete and the children who are done with treatment.
But Job replied, “…should we accept only good things from the hand of God and never anything bad?” Job 2:10
Please pray for: …
1. Thankfulness for the regular stuff.
2. Sam, Nick, Katrina & Don.
3. Hannah’s cancer and fungal infection to be gone forever.
4. The families whose children didn’t survive. They need prayers every day

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)
www.caringbridge.org/visit/jaxonburns (Jaxon’s site)

Friday, July 4, 2008 9:57 AM CDT

In July 2004 I was a participant at the Gardner Relay For Life. In August 2004 I won first place at the Jr Olympics for my age division in Olympic Style Weightlifting. In September 2004 I was diagnosed with Stage IV Burkitt’s Lymphoma. A rare, aggressive but treatable form of cancer. I had tumors in my abdomen, liver, appendix, kidneys, bone marrow, spinal fluid and bones. I spent the next 9 months getting 10 rounds of chemo. Unfortunately 8 weeks later I found out my cancer was back. There was no proven treatment available so I was enrolled in a clinical trial to test the toxicity of 3 hard chemos as well as a drug being trialed in pediatrics. I was given 2 rounds before I developed a fungal infection that is typically fatal in patients whose immune system has been depleted because of harsh chemo treatments. I had 8 surgeries in the next 2 weeks to slow the progression of the infection with several more surgeries later. I got a feeding tube in my stomach and remained on the experimental drug to try to keep my cancer in remission while I battled the infection for the next few months. In November 2005 I got a stem cell transplant. During my treatment I missed my 8th grade and freshman years of school. I had 81 days of chemo that sometimes lasted up to 12 hours a day, 24 spinal taps to inject chemo into my spinal fluid, 9 bone marrow biopsies, 195 units of blood products, dozens of surgeries, countless scans and tests and over 300 days in the hospital. I was given a 0% chance of survival after my relapse and fungal infection, it was raised to a less than 20% chance because I qualified for 2 experimental drugs. The research for one of those drugs was funded by the Relay For Life. Because of money that was raised years ago Rituxan was researched, trialed in adults and finally in pediatrics. I continue to Relay and Fight Back because some of my friends weren’t as lucky as me. I fight back for Zach, who was 11 years old, Joshua, who was 13 months old and Kara, who was 14 years old when they developed their fungal infections but didn’t survive because there wasn’t an experimental drug to keep their cancers in remission while they fought their infections. I fight back for Natalie, who was 14 years old, Nathan who was 12 years old, Raven who was 7 years old and Derrek who was 19 years old. My friends who didn’t find their cures on earth. I fight back for all of my friends who are surviving and our parents who pray every day that our cancer doesn’t come back. I’m fighting back at Relay events to encourage and inspire everyone to continue to raise money to fund the research to develop more drugs to fight cancer. We shouldn’t have to rely on miracles to survive. What you are doing is making a difference. Relay For Life saves lives, I know because it saved mine.

Monday, May 26, 2008 11:05 AM CDT

Monday, May 26, 2008:

I thought I should include the year because it’s so long between posts! Hannah is finished with her junior year! This has really been her best year. Her sophomore year she was still recovering and was sick most of the time as well as not having many friends. That was hard because everyone had their group of friends and they knew her, but didn’t know her anymore. This year has been better health-wise as well as friend-wise. It’s hard to explain how wonderfully normal her year has been. I’m starting to have a hard time with the realization that next year is her senior year. I am so happy for her.
Hannah and my mom went to see Wicked and even got a backstage tour. She saw the traveling version of Wicked last summer at camp and has been obsessed with it ever since. I got to spend a weekend with some of my mom friends from the hospital. It is so good to have others who understand our lives. The thing with cancer is that it has an emotional impact on your life that lasts probably forever. Jacob is home for the summer and it’s good to have him around.
Medically not much has happened since last month. She had some appointments scheduled but we rescheduled most of them because they fell the week of her finals. She has her clinic appointment and CT scan on June 4th, endocrine appt on the 9th and the plastic surgeon on the 27th. Other than her sinuses she has been feeling pretty good. She broke out in hives a week ago and that kind of freaked us out (not cancer-wise) just because it seemed so random. A run into the grocery store for some Benadryl and she was fine an hour later. She is working in the nursery at church and we have VBS next week in the evenings so she and I will be busy with that. She is going to be doing some weekend babysitting for a boy in town and will be watching Lily and her brothers a couple of days a week. We are so excited that Lily (our Lily from treatment!) is moving so close by! It’s ironic that Hannah and Lily were both given devastating odds of survival and will now get to spend a “regular summer” together. Hannah and Lily were both diagnosed near the same time, relapsed the same summer and both given very low chances of survival as well as facing complications that reduced their already low odds. Jen and I tried to convince each other that “it can work”. It really can work, but there still needs to be so much more research. There are too many children for whom it didn’t work. While we rejoice every day for our daughter’s lives we have too many friends whose hearts ache to hold their children again.
Hannah had planned to volunteer at Children’s Mercy this summer but we got word this week that because she is still not immunized they won’t allow her to. She was so disappointed and angry that cancer still has a hand in her life. (I won’t get on my soapbox again that the treatments are so harsh that 2.5 years after treatment her blood still hasn’t recovered! Where’s the research? Oh, I wasn’t getting on that soapbox.) So, after some tears and a visit to the dreaded pity party we made an alternate plan. She is going to volunteer at the American Cancer Society one day a week. She has a lot of Relays she is scheduled to speak at this summer too. She has a full schedule. I know this summer is going to fly by!
Please continue to keep those going thru treatment in your prayers it‘s such a stressful time. Keep those who have finished treatment but are living with the physical and emotional side effects, and the families of those whose cure came in heaven in your thoughts and prayers.

Our family is once again raising money for the Relay For Life. Hannah was given a 0% chance of survival when she relapsed and got her fungal infection. It was raised to less than 20% when she got a compassionate use exemption for an adult experimental drug (AMD3100) and used the Relay For Life funded drug Rituxan. Of course she still needed to get thru transplant and she’s still dealing with some of the long term effects of her treatment but she’s alive! We are grateful and we want to give other families a better chance of survival. Please consider donating by clicking on the link below or finding a Relay event in your area to attend. We have the power to fight back against cancer!

You are the light that gives light to the world. A city that is built on a hill cannot be hidden. And people don’t hide a light under a bowl. They put it on a lamp stand so the light shines for all the people of the house. In the same way, you should be a light for other people. Live so that they will see the good things you do and will praise your Father in Heaven. Matthew 5:14-16

Please pray for: …

1. Thankfulness for the regular stuff.
2. Sam, Nick, Katrina & Don.
3. Hannah’s cancer and fungal infection to be gone forever.
4. The families whose children didn’t survive. They need prayers every day

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)

Thursday, April 17, 2008 9:21 PM CDT

April 16:

I’m going to stop apologizing for the slow updates because it’s a good thing. Our lives are busy and without any real medical problems. I say ‘real’ problems because after cancer you have a different perspective and although we complain because so much (probably all) of what she has going on is treatment related it’s still better than cancer. Hannah continued to run fevers and feel pretty horrible for two weeks in March. It was hard because I was in Miami and texting support just isn’t the same. I got to go to the National Initiative for Children’s Healthcare Quality conference as a parent representative for the hospital. It was a great conference just not great timing. We spent the week before at various doctor’s appointments so at least we knew she had the regular stuff that the rest of the country has had this winter. She’s felt pretty good since then.
Last Friday she spoke at the UMKC Relay For Life. It was freezing and snowing! She does such a good job. I love to talk (even more than I love to write) and I’m not sure how well I’d do telling our story to hundreds of people. She’s admitted to me that she gets nervous but I know that it bothers her that for some of her friends there wasn’t an experimental drug that could give them life. The fact that she had a drug that could keep her in remission while she recovered from her fungal infection made the difference. She is still feeling the effects of that treatment though, two and half years after her transplant. She still can’t start her immunizations because her IgG level can’t stay up on it’s own. Since she got her own stem cells her cells were all reproducing from scratch (basically) and they don’t have the memory of her previous immunizations. When you get donor marrow there are many more side effects but you get the donors immunities so you don’t need to be re-immunized. We’re thinking ahead to college and living in the dorms and the need to be immunized. Strange problem.
I met the nurse for the craniofacial/cleft palate & plastic surgeon at work on Tuesday. They are going to look at her palate and tell us what the options are. She’s not sure what she wants to do or if anything can be done, but it’s good to know your options. Right now it’s good for the doctors to be able to see into her sinuses to make sure there isn’t any infection.
A couple of weeks ago one of her classmates died in a car crash. Please keep Garrett’s family and friends in your prayers. I think it brought back a lot of emotions she hasn’t dealt with for several of her friends’ funerals she’s attended. I think we deal with a lot by putting it aside and not dealing with it but sometimes you can’t do that. It’s been a rough time in Gardner and there are a lot of teenagers that are hurting.
We spoke to the sleep doctor and he thinks that Hannah’s sleep problems are anxiety related. She was pretty mad because she just wanted them to find a medical problem and fix it. Instead she has to try to fix it. I talked to one of the psychologists at the hospital and she gave me some ideas for Hannah to try. It comes down to the fact that getting over cancer and all that she’s been through is as hard as we imagine. Hannah has been trying some of Dr. Hardy’s ideas and she thinks it’s getting a little better. When Hannah was in treatment writing this journal helped me put my thoughts for the day in writing so I was able to clear my mind (as much as I could) and sleep. I knew that the days events were recorded so I didn’t need to keep going over them in my mind. I still have trouble sleeping whenever anything out of the ordinary happens, but I think that’s pretty normal for anyone. At least that’s what I tell myself so please don’t tell me any different!
Please continue to keep our friends in your prayers. It helps so much to know that others care and there is real strength gained from your prayers. Sam is doing great (in cancer terms) with his chemo and they are letting him do it out patient instead of being admitted. Katrina is continuing to recover well from her second transplant but we can’t stop praying. Nick is getting ready for his transplant. Don is in the midst of chemo and he’s feeling the full effects. No matter what your age, cancer sucks!!!

Bob is once again on the Overland Park Police Dept. Relay team. Since I’m the co-chair of the community event I just help him out with his fundraising. He’s our family representative on a team. Please check out his site. I added it to the links but you might have to copy and paste it. If we waited for me to figure out how to make a link the Relay could be over! If you live nearby, we’d love for you to come out on July 11th and if you live anywhere else, find a Relay event in your area. It’s empowering to be with such a large group of people who are so committed to bringing an end to cancer. I guess I just hate feeling like a victim so I want to do everything possible to fight back. I believe there are more experimental drugs like the one Hannah got that can save more lives.

I pray that God, who gives hope, will bless you with complete happiness and peace because of your faith. And may the power of the Holy Spirit fill you with hope. Romans 15:13
Please pray for: …

1. Thankfulness for the regular stuff.
2. Sam, Nick, Katrina & Don.
3. Hannah’s cancer and fungal infection to be gone forever.
4. The families whose children didn’t survive. They need prayers every day

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)

http://main.acsevents.org/site/TRC/RelayForLife/RelayForLifeHighPlainsDivision?fr_id=5875&pg=center

You can cut and paste this onto your browser.

Saturday, March 15, 2008 6:50 PM CDT

Sat. March 15:

Apparently I’m able to update about once a month! Her clinic appointment in February went well, uneventful so that’s great. Her counts were all within normal the range. She had a chest x-ray done because the CT scans are spread out more now that she’s further from transplant. A couple of labs weren’t drawn because the hospital changed its reporting system. She continues to be busy with regular teenage stuff.

She started feeling sick on Sunday (3/9) but we try to “wait and see” these days. She came home from school on Monday with a 102 temp and swollen sore lymph nodes. We refilled one of her antibiotics to see if that would help. It didn’t. When she still wasn’t better on Wednesday I started calling doctors. ENT wanted a strep and flu test, Dr. Lewing wanted a mono and Epstein Barr Virus (EPV) test done. Strep, flu and mono all came back negative. Her CBC still looked good (great sign). The EPV is sent out to another lab so those results aren’t back yet. She continued to run 102 temps so we went to see her ENT (ear nose and throat) doctor. She did some cultures and “cleaned her out”. That is a gross procedure but one that brings some relief. Her temps were coming down so she started feeling a little better. We went to the hem/onc clinic on Friday to see Dr. Lewing. I’m going to be out of town next week for a conference and Dr. Lewing will be gone for spring break with her kids so we thought a quick visit would make us all feel better. Hannah’s IgG level is still low and dropped some more so she got an IVIG infusion. She was feeling better yesterday, but woke up with another fever and sore lymph nodes and achy all over today. I just talked to her ENT doctor who is calling in another antibiotic. Hannah’s cultures came back positive for 2 different types of infections that need treated with different types of antibiotics. She’s on one so we’ll drive to the 24 hour pharmacy to pick up the other one. The sooner she’s on it the sooner she’ll feel better. We still don’t know if this is EPV also. It’s been one of those roller coaster weeks where we were acutely aware of how scary another relapse is. We mostly live in the moment and enjoy good health and push the negative worries to the deep dark corners of our mind. Every once in a while they creep back out, but thorough testing and we’re back to the “normal” illnesses of kids after cancer. Hannah is on spring break next week so she’ll have another week to recover.
Blade was in the hospital for pneumonia but got to go home today. Katrina had her second transplant yesterday. Sam is “hoping” (nobody wants to but does what’s necessary) to start chemo next week. Don continues with his chemo and there are so many who are still recovering. Say a prayer for those who are still in the fighting mode, for those who are missing their children, and for those who are recovering. Appreciate your good, boring, normal days - they’re actually great days. Hug your kids and your parents and even your friends. Happy Easter!

Be glad for all God is planning for you. Be patient in trouble, and always be prayerful. Romans 12:12

Please pray for: …

1. Thankfulness for the regular stuff.
2. Sam, Nick, Katrina & Don.
3. Hannah’s cancer and fungal infection to be gone forever.
4. The families whose children didn’t survive. They need prayers every day

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)

Saturday, March 15, 2008 6:50 PM CDT

Saturday, March 15, 2008 6:48 PM CDT

Sat. March 15:

Apparently I’m able to update about once a month! Her clinic appointment in February went well, uneventful so that’s great. Her counts were all within normal the range. She had a chest x-ray done because the CT scans are spread out more now that she’s further from transplant. A couple of labs weren’t drawn because the hospital changed its reporting system. She continues to be busy with regular teenage stuff.

She started feeling sick on Sunday (3/9) but we try to “wait and see” these days. She came home from school on Monday with a 102+ temp and swollen sore lymph nodes. We refilled one of her antibiotics to see if that would help. It didn’t. When she still wasn’t better on Wednesday I started calling doctors. ENT wanted a strep and flu test, Dr. Lewing wanted a mono and Epstein Barr Virus (EPV) test done. Strep, flu and mono all came back negative. Her CBC still looked good (great sign). The EPV is sent out to another lab so those results aren’t back yet. She continued to run 102+ temps so we went to see her ENT (ear nose and throat) doctor. She did some cultures and “cleaned her out”. That is a gross procedure but one that brings some relief. Her temps were coming down so she started feeling a little better. We went to the hem/onc clinic on Friday to see Dr. Lewing. I’m going to be out of town next week for a conference and Dr. Lewing will be gone for spring break with her kids so we thought a quick visit would make us all feel better. Hannah’s IgG level is still low and dropped some more so she got an IVIG infusion. She was feeling better yesterday, but woke up with another fever and sore lymph nodes and achy all over. I just talked to her ENT doctor who is calling in another antibiotic. Hannah’s cultures came back positive for 2 different types of infections that need treated with different types of antibiotics. She’s on one so we’ll drive to the 24 hour pharmacy to pick up the other one. The sooner she’s on it the sooner she’ll feel better. We still don’t know if this is EPV also. It’s been one of those roller coaster weeks where we were acutely aware of how scary another relapse is. We mostly live in the moment and enjoy good health and push the negative worries to the deep dark corners of our mind. Every once in a while they creep back out, but thorough testing and we’re back to the “normal” illnesses of kids after cancer. Hannah is on spring break next week so she’ll have another week to recover.
Blade was in the hospital for pneumonia but got to go home today. Katrina had her second transplant yesterday. Sam is “hoping” (nobody wants to but does what’s necessary) to start chemo next week. Don continues with his chemo and there are so many who are still recovering. Say a prayer for those who are still in the fighting mode, for those who are missing their children, and for those who are recovering. Appreciate your good, boring, normal days - they’re actually great days. Hug your kids and your parents and even your friends. Happy Easter!

Be glad for all God is planning for you. Be patient in trouble, and always be prayerful. Romans 12:12

Please pray for: …

1. Thankfulness for the regular stuff.
2. Sam, Nick, Katrina & Don.
3. Hannah’s cancer and fungal infection to be gone forever.
4. The families whose children didn’t survive. They need prayers every day

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)

Thursday, February 14, 2008 9:19 PM CST

Thurs. Feb. 14:

Happy Valentine’s Day!
Life is blissfully busy around here. Hannah is always busy with school and she has given a couple more speeches for ACS. Unfortunately she is still fighting the sinus infection. We started her on a different antibiotic today. She’s had a fever the last few days and missed school so I think she might have a virus on top of the sinus stuff. Hannah had her sleep study last week but our appointment for the consult about it isn’t until March 17th. She was supposed to have a hem/onc clinic appointment yesterday but we moved it to next week. It’s a good thing too because she was running a fever and I wouldn’t want her around all of those kids. Even with a mask and being in an isolation room I wouldn’t want to take any chances. I remember when she had no counts and I was like a hawk on the look out for anyone with any type of germs. She is scheduled to go next Wednesday. I’ll try to update sooner.
The seminar about life after treatment was really interesting and enlightening. It’s not easy to listen to all of the possible late effects, but it was reassuring to hear that some of the things Hannah is going through are documented and “normal” for kids after treatment.
My big news is that I started working at the hospital this week. I’m working part time (quarter time) as a Family Centered Care assistant. There are now 3 of us “parents of patients” on staff to work with the hospital and families. We give the parents resources to help cope with the diagnosis and life with children of chronic or critical illness. We are working with the hospital to understand what is helpful for families and what isn’t helpful. It is an extension of the Family Advisory Board which I’ve been on since this summer. It’s amazing how much credit the hospital gives to the advice of the families. I have to say that being at the hospital on my terms is a much better position to be in. I still have my computer job at home and my position at church. I guess it’s time to get organized! Bob is working days on the street and that is still going well. Jacob is back at school and football workouts have started as well as coming back to Gardner for weightlifting in the evenings. It’s nice to see him. We’re all busy but we still get to spend time together in the same room on comfortable furniture. I still remember when we were living in the hospital and sitting on vinyl covered uncomfortable chairs with florescent lighting. Things like a night at home with homemade beef stew and an old movie on tv is the good stuff.
I went down to Joplin Missouri last weekend to scrapbook with Kara’s mom, Jeanne. It was good to be able to spend some time together. I saw Blade and Gunner’s family in clinic on Wednesday. Since I was working I stopped by when I was done. Blade had a scare of relapse and needed to get a back brace. His tests have all come back clear so far! Life after treatment isn’t as easy as you would think. Sam was inpatient for chemo after getting his knee replaced last month. Nick is still in and working on recovering before going to transplant. Katrina is in Texas and recovering from an infection and getting ready for her second transplant. Don has started losing his hair so the chemo is kicking in (actually it was but now it’s obvious to everyone else too). Please remember those who have been affected by cancer and take the time to hug your kids and enjoy a boring night at home together (on comfortable furniture!). It’s a gift, when you recognize it you get to enjoy it.

My prayer is that light will flood your hearts and that you will understand the hope that was given to you when God chose you. Then you will discover the glorious blessings that will be yours together with all of God’s people. Ephesians 1:18

Please pray for: …

1. Thankfulness for the regular stuff.
2. Sam, Nick, Katrina & Don.
3. Hannah’s cancer and fungal infection to be gone forever.
4. The families whose children didn’t survive. They need prayers every day

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)

Thursday, January 24, 2008 9:38 PM CST

Thurs. Jan. 24, 2008:

I can’t believe January is almost over! Hannah is doing great! She enjoyed her Christmas break but doesn’t mind being back in school. (most of the time) On the medical front we went to the sleep clinic and we have a sleep study scheduled for Feb. 4th. Hannah is still exhausted all day long so we really need to figure out what is going on. The doctor thinks it might be restless leg syndrome and the leg movements are keeping her from staying in a deep sleep. When she was on Neurotin it would have helped with the symptoms so that might be the reason why she has gotten more tired since she has stopped taking it. All I know is that we need to find out why she isn’t getting rest when she’s sleeping. Today we went to the ENT clinic because her sinuses have been bothering her for quite a while. I should have taken her a few weeks ago but the symptoms haven’t been too bad so we put it off. Dr. Latz said it was a good thing we were there because her sinuses didn’t look very good. We get a good look because of the hole in her palate. The doctor cleaned her out (lots of suctioning and picking - gross stuff!) and sent off some cultures. She wants to check for bacterial or fungal infections. I don’t like hearing the fungal word (I was going to say the “F” word and I guess that is the category I put fungal infections in!) but I’m not worried to the point of not being able to sleep. Parents who have gone through this know what I’m talking about. There’s the worry where it’s on your mind and there’s the worry where you can forget about sleeping because it’s camped out in your mind. I still feel confident that she’s just got a “regular” infection. She goes back to the hem/onc clinic on Feb. 13th.
Hannah has given a few more speeches for the ACS and she has several dates on the calendar for Relays to speak at. She does a really good job of standing up in front of hundreds of people to tell her story. I think that compared to fighting cancer public speaking is a piece of cake! You know she would be rolling her eyes at that. She turned in her application to volunteer (as a leader in training) at the Hole in the Wall Gang camp this summer. It would only be for a week, but eventually she wants to be a counselor. She also applied at Build-a-Bear and she’s going for an interview next Monday. On Sat. Feb. 2nd we’re going to take part in a Leukemia & Lymphoma “Life After Treatment” seminar. We’ll be part of a panel at the end of the day. Life after treatment is another part of the journey and comparatively speaking it’s not the hardest part, but I would have liked to have been better prepared (at least known that life wouldn’t be “normal” again).
Hannah’s nurse, Kristin, finished her marathon for the L&L Team in Training! You can still donate to the site at the bottom of the page. There needs to be better treatments! It’s so frustrating that if there was enough money there would be more cures.
We have several friends who still need your prayers. A couple of my adult friends finished their treatments (and are entering “life after treatment”) and Don started his chemo on Monday. Katrina is in Texas and getting ready for her second transplant. Sam had his knee replaced and they found out there was 100% tumor kill (!) and they are getting ready to find out what the next course of treatment will be. More chemo but they don’t know how much. Nick is recovering from brain surgery and still has quite a road in front of him before he gets to transplant. (his site is listed below) We met Nick after Hannah’s relapse. Several kids that went through treatment with Hannah are doing great but the fear of relapse always remains. We are thankful for the good days! A 14 year old girl (Victoria) who was a Hero of Hope before Hannah earned her angel wings this week. Please pray for her family and friends.

I pray that God, who gives hope, will bless you with complete happiness and peace because of your faith. And may the power of the Holy Spirit fill you with hope. Romans 15:13

Please pray for: …

1. Thankfulness for the regular stuff.
2. Sam, Nick, Katrina & Don.
3. Hannah’s cancer and fungal infection to be gone forever.
4. The families whose children didn’t survive. They need prayers every day
5. Sam, Don, Cade, Patty & Mike and others fighting cancer.

Sites of some friends we’ve made:
www.caringbridge.org/ks/zachzoo (Zach’s site)
www.caringbridge.org/visit/coachbechard (Don’s site)
www.caringbridge.org/visit/haileymarie (Hailey’s site)
www.caringbridge.org/visit/joshuawade (Joshua’s site)
www.caringbridge.org/visit/cadestapp (Cade’s site)
www.caringbridge.org/visit/mikedishman (Mike’s site)
www.caringbridge.org/visit/nathan_thomas (Nathan’s site)
www.caringbridge.org/visit/lilyclaire (Lily’s site)
www.caringbridge.org/visit/nickjones (Nick’s site)

Click here to go back to the main page.

Click here to view older journal entries.