Almost finished!

Quick update. This past Wednesday, Eden completed the very last of her clinic visits for chemo! She is currently finishing her last round of steroids and by the end of next week she will have reached the very end of her treatment protocol.

Eden has been doing very well over the past several months (other than having to get tubes in her ears). Her hair has grown in red and curly again. She is definitely feeling better, as she seems to run nearly every chance she gets and she is looking forward to getting her port removed real soon.

Selena and I have been looking forward to this point for 2+ years, and now that we are here, we are experiencing mixed emotions. Excitement followed by fear and ultimately followed by being thankful that we are all together. We are absolutely thankful to have been so blessed in so many ways.

Thank you very much for all the thoughts and prayers for our family throughout this journey! We appreciate your support.

A Week at the Hospital

2010 has been good to the Levetzow family - for the most part. The summer brought some changes in Eden's chemo regimen as her blood counts were often unfavorably low. She was often having weekly blood draws and we spent more time at home than intended, due to netropenia Eden spent 8 days in the hospital the beginning of August but since that stay she had returned to our healthy little girl. We have said to many, the month of September has been the best month since Eden began treatment in January of 2009. Eden has started attending preschool three mornings a week and she loves all of her friends. She loves being outside swinging and cruising the side streets of Washington on her Strider Bike.

We were reminded of the reality of Eden's health on the morning of October 26, Eden woke up with a fever. We were admitted to the hospital in Iowa City that morning. The nurses accessed her port and they ran blood cultures before starting antibiotics. Eden was lethargic most of the day. She only spoke a few words. She knew we were taking her to the hospital and the only question she asked was will they let me lay down? When we arrived on the floor she was greeted by our nurse and she said, "I don't want a pokey thing!"

The blood culture that was drawn when we arrived came back positive so she was started on a second antibiotic. The infection was controlled by the antibiotic as her fever subsided and only the first blood culture came back positive. The protocol for a positive culture is 7 days inpatient and 10 days of IV antibiotics following the first negative culture. The infection caused Eden hemoglobin to plummet and for the first time in over a year Eden received a blood transfusion. It is amazing how fast a little blood can perk a little one up.

Eden has not wanted to participate in many of the planned activities that the hospital and the Dance Marathon Volunteers offers. She has requested to go home more than normal. She is enjoying her life at home and being hooked up to an IV pole has interfered with her agenda. Today, Eden was able to be unhooked from her IV pole and she was able to ride her little bike through the halls of this amazing hospital. It was much better than the game of hide and seek we were playing with Eden hooked up to an IV pole. Today was good - Eden's smile can overshadow the location any day.

With Eden's best interest pretty much the only thing on our minds, the week has went by fairly quick. Although, we had intended on cheering on the Cyclones via Jack Trice we were thrilled with a win even in our absence. From our room, we could hear the crowd cheering the Hawks on to a great win - we were even cheering for the Hawks.

Eden's port has caused some discomfort and problems this visit. Tonight Eden's port would flush (allow fluids in) but would not draw (allow blood to be pulled back out). So after much despair and several attempts at getting the port to draw blood, the decision was made to re-access the port. This is upsetting to Eden. So we had the port removed, got a good soaking bath without having to protect an accessed port from the bath water, and finally had the port re-accessed. We all had our fingers crossed that the blood would draw - but it wouldn't. We were all extremely bummed and even had the nurses scratching their heads. It would flush really well, but wouldn't draw. So they tried several nursing tricks without success. So for the first time in 22 months it was necessary to administer TPN to dissolve a potential clot in her port. Finally around midnight Eden had a fully functioning port.

The plan is that by Tuesday, we should be getting discharged. We'll be very excited to get home and back into our routine. Eden misses her classmates and teachers - she has told several nurses about Mrs C & Mrs Warren. We are looking forward to some bike rides without limitations of halls, sleep without interruption and just life outside of the hospital.

We're sorry we haven't kept you all updated, but honestly, there's only so much to tell - since she's done so well.

Thanks to all of you out there who have expressed to us that you keep Eden in your prayers, and same to all of those out there that we don't even know about who are praying for her little body to heal.

Rough start to August

Monday, August 2, 2010, started like most other days, however, by 2pm, Eden was admitted to the University of Iowa Hospital due to the dreaded ‘fever’. For the next four days Eden battled fevers coming and going. Each time the fever would go away, we hoped we were out of the woods, only to have it come back. Thursday morning at 9am was the last high temperature she’s had. After running several blood cultures, the team of Drs determined she had a viral infection.

The week has flown by, as all of our thoughts and concerns have been directed to Eden’s well being. Now that we can sit back and take a deep breath, we’re just thankful for how this event has turned out.

As I type this blog entry, she’s snuggled up next to mom in the bed, eating a bowl of vanilla ice cream and watching “Girl Power Veggie Tales”.

Even though it’s hard to say for sure what Eden’s been through this week, I do know that she’s been very well taken care of. As always, our team of nurses have been nothing short of Excellent. They’re sweet, caring, and attentive - everything you’d want in someone providing care to your child.

Twice today we talked the nurses and Dr’s into unhooking Eden from her “tree” so we could go outside to the play area. We took advantage of that, and had a great time playing with her and watching her run around and laugh again.

Eden’s white count and ANC have been slowly rising for the past couple of days, but the Dr’s won’t discharge us until her counts reach a certain level or she has been on IV meds for 7 days. So if all goes well, we’ll be going back to our normal life soon.

Thanks for all the thoughts and prayers for Eden!

Discontinued again

Once again our routine clinic visit did not go as planned when Eden’s labs once again showed the signs of chemo. Her white blood count was .8 and her neutrophil count was 200. So for the second consecutive month all oral chemos have been discontinued and labs will be rechecked next week. We were very disappointed with the results, but find comfort in that she seems to feel okay, not great but we have witnessed many different demeanors. Eden will once again have a “poke” on Wednesday to determine if her oral chemo can be resumed. My understanding is they will start her at a dose less than the 125% she had been taking. In the meantime we have returned to the solitude of home. Someone asked me what this means and we don’t know . . . we are comforted by knowing God is in control.
Because we have been negligent in updating our blog I thought I would share some randomness
- Eden has a new pet tadpole named “Chicken” thanks to the Horak boys for a great gift
- Eden is terrified of tall buildings and parking ramps . . . they remind her of the clinic and she tells us the clinic is “NO FUN-NO FUN!”
- She loves riding her Strider bike, reading books and anything with her Dad
- She generally runs to greet Dad at the door, this week she has not felt so well and she remained in my lap when Kurt walked in she looked at me and said, “Mom your husband is home”
- She asked me “Mom, will you call the clinic and ask them if I have to come?” I picked up the phone some time later and she said, “Mom, are you calling the clinic?” We are looking forward to days when her thoughts are not consumed with pokes.
- The other evening Eden was getting after me about how I was doing something, I asked her why are you yelling at me Eden, she said “I am just a little crabby today.”
- Seems like she’s always asking if something is “nutritious”.

Thanks for keeping Eden in your prayers.

Comfort of Chemo

On a recent trip to the clinic for chemo Eden asked me, “Mommy why are you sad?” I responded by telling her “I am sad because you have to get chemo.” In the sweetest voice from the back seat, “but Mommy I have to get chemo to get rid of my icky-sicky cancer.” God is so good . . . we have the most amazing little girl that helps us through the days when joy is overshadowed.
Last month Eden’s chemo was increased to 125% of the normal dosage for all her oral meds. With the increase in chemo we noticed more days of lethargic behaviors and more nausea and vomiting. The side effects bring mixed emotions as it is reminder of all the “normal” that cancer has taken away however we are thankful the treatment is successful in conquering the cancer cells.
This last month’s clinic visit did not go as we had planned . . . her blood counts plummeted. Her netrophil count was 340, well below the 1550 – 5500 normal range. For the first time since beginning maintenance last fall chemo was discontinued. The monthly clinic visit that has become our normal left us all with fear and many questions. Eden’s counts were rechecked in a week and indicated they had rebounded. Chemo was restarted at her normal dose of 125% and we all feel a comfort knowing she is receiving her daily chemo.
Thanks for checking in on us.

Finally Updating

Once again our apologies for not updating. We understand so many have been checking in to stay aprised on our Eden and we have neglected writing for various reasons.

Time - now that we are comfortable taking Eden out we are busy, and loving it!

All is well - No news is good news!

Cancer stinks - cancer still plagues many aspects of our life and sometimes attempting to write shows all the ugliness of this disease.

Eden continues to do fabulous! She is a normal little 3 year old that enjoys reading books, playing with friends and doing just about anything outside. She keeps all of our days filled with laughter and often our nights as she not only talks in her sleep but laughs out loud as well. We love every minute we have with her!

On the medical side of life Eden continues to receive oral chemo daily with a second oral chemo on Wedensdays. We notice after the additional chemo on Wedensday she is lethargic on Thursdays, and thankfully these effects are generally reversed within a day or two. Eden still visits the clinic every 28 days for chemo via her port. As with all meds there are side effects . . . fortunately we seem to be able to minimize them with other meds. Eden's ANC has yet to be at the desired level. If her blood counts are high at her next clinic visit they will increase another chemo to 125% of the normal dose for her size. We are so thankful that God has continued to protect her throughout treatment.

Friends and the great outdoors:
We enjoyed spending alot of time outdoors this past weekend, working around the yard, visiting with friends, and enjoying nature's critters. A nest of cardinals were discovered in one of our small trees near the edge of our house, and inside the nest were 3 eggs. The next day, the 3 eggs hatched out so we had fun checking in on them often! We also discovered a nest of baby rabbits in our window well - very young rabbits. This was a total hit with Eden and the neighbor kids! Eden, was observed sliding down the slide without the safety net of someone catching her, both arms straight out to each side, one hand was wide open as if she were riding on a roller-coaster, the other hand possessed a little, fuzzy, most certainly terrified baby rabbit. We're happy to say that the baby rabbits all survived the snuggling that the kids gave them, however, the mother rabbit was not amused with the events that took place with her babies, so she removed them that night and placed them in a safer environment!

Increasing Chemo

Another month has passed and we are one month closer to having our little girl off treatment and cancer free. As anticipated the increase in chemo brought the return of chemo side effects. We spent several days with a lethargic toddler that preferred doing nothing. We knew she did not feel good when she did not want to go outside. Our little red head lost about a third to half of her red curls she had accumulated. Since entering the maintenance phase of treatment her hair had returned thick and with beautiful curls, the additional chemo left us with handfuls of hair . . . everywhere. After much discussion we reluctantly agreed that it was time to cut her remaining hair and then it stopped falling out. So no hair cut and she is left with a very thin beautiful head of red curls. She remembers bandannas and is cooperative of wearing head cover when she is outside. Other side effects have been combated with meds and overall she has returned to our little girl. Thanks for continuing to pray for our little girl.