Happy Thanksgiving!

Happy Thanksgiving everyone!  Rena was released from the hospital Wednesday afternoon so we were able to enjoy a quiet Thanksgiving at home.  We are very grateful for our friends and family this year!

Second Round - Back Again

Hello everyone. We are back again for the second round of this course of chemotherapy treatment.  We expect to be in the hospital until Wednesday and so should be home in time for Thanksgiving.  In case you were wondering she will have 2 additional in-patient treatments of this type during the month of December.   
Ginger

Rena's Portrait of Nate

Current Treatment

Hello. Rena's new in-patient treatment went well and we were able to bring her home last Thursday morning.  She has a very sore mouth and throat as a result of the chemotherapy drug, but it is getting better. We return again this Sunday and hope to bring her home again before the Thanksgiving holiday next Thursday. 

In patient treatment begins today

Hello,
Today Rena is starting the first, in a series of four, in-patient chemotherapy treatments.  So we are back with our friends at the hospital for a few days.  Although we would rather be home, it is certainly a different experience being here with the expectation that we will leave be home in a few days.  Rena is seeing the hospital food with new eyes and is right now sampling the baked cod and a salad.  Apparently the baked cod is very delicious.
Ginger

New Picture of Rena

Hello everyone.  The last few months Rena has lost the last of her hair.  It was difficult at first, but now we are all getting used to it.  The hair loss is only temporary and her hair will grow back better than ever when she is on maintenance. She said we could post a picture of her so that everyone can see how she looks.

After Rena lost her hair she invented special hats which have hair extensions sewn on the bottom of the hat. They look very realistic.  She wears these when she leaves the house and is hoping to make more to share with other children at the Cancer Center.

Update on Rena's Treatment

Hello. We just found out that Rena's treatment plan will change.  She will have one more phase to complete before she goes into maintenance.  She should be finished by the end of December and will hopefully start maintenance and go back to school sometime in January. She is doing great and this change in plan is not a reflection on her progress.  Basically it happened because a recent study showed that adding this other phase increases her chances of complete long-term recovery. 
thanks,
Ginger

Rena Banana

Happy Halloween Everyone!

Keeping Busy

Hello!  Rena has been keeping busy as she counts the days until she can return to school.  She has been doing lots of crafts with duck tape and other interesting items.  This week she is back into knitting. She knit a scarf and several interesting creatures.

Almost done

hi everyone I am about to go back to school only 2-3 more weeks

Berry Picking

Meet "Macro" The Caterpillar

Rena recently acquired  a large caterpillar from the Leslie Nature Center here in Ann Arbor.  Enjoy the pictures of her newest pet:

Getting Ready for FALL!

Hello Everyone!

We had our first appointment for the "Delayed Intensification" phase of Chemotherapy, however Rena's counts were not high enough to begin.  So she gets another week off!  Delayed Intensification is the last intense phase of chemo before she begins long term  maintenance.  During maintenance Rena will only have Chemotherapy in clinic once a month.  That means that she will be able to return to school and spend more time outside of the house.

We anticipate that Rena will be able to return to school in November, so yesterday we registered her to start the 7th grade!  During September and October a Home-bound teacher will visit Rena a couple of times a week to bring and return her school work.  We have been working hard all summer to get Rena caught up from all the school she missed last year and I think Rena will be ready to jump back in.

Rena is still feeling great and has been really active.  She is riding her bike several times a week and going outside to hunt for bugs every day.  My mom came out from Washington State to visit a couple of weeks ago and Rena's friend Aubrey came to visit all the way from Oregon.  Rena enjoyed seeing Aubrey and her Nana very much and this was a nice way to finish up the summer. Rena still sees her friend Amanda from school every couple of weeks.  They swap caterpillars, strange erasers, and act very silly together.

Ginger

The Emperor of All Malladies

Hello Everyone!  I wanted to share with you the title of a great book that I have been reading called "The Emperor of All Maladies" by Siddhartha Mukherjee.  The book is a history of cancer that incoporates some science and personal accounts of patients.  The author, Mukherjee, is an oncologist and a very good writer.  It has actually helped me to understand Rena's illness much better and helped me to see how fortunate we are that we live in the year 2011 and not 1960 or even 1980!
Ginger

More Rena pictures!

Enjoying the Summer!

Hello Everyone!  I'm so sorry we haven't posted in a while.  I guess we've been enjoying our relaxing summer.  Rena is doing really well.  She finished up physical therapy and is riding her bike around the neighborhood alot. We also managed to take her to the recent Harry Potter movie.  We just went to an early matinee in the middle of the week, when there was no one around.  I wiped the seat with bleach wipes and also covered it with a cloth to protect her.  A few preventative measures and it seemed to work out fine.

Rena just had her last appointment for this phase of her treatment and will start the next phase in a few weeks.  Only one more intense phase until she begins long-term maintenance.  If all goes well she should be back in school sometime in November.   We love you all! Thanks for the continued support.

Ginger

Rena getting the tips of her hair colored pink .....

Rena Riding Her Bike

Rena today riding her bike for the first time in months!

Happy Summer!

Hi! This is rena. I'm happy to be home. It's much better to not have to eat hospital food. Thanks for the support while I was in the hospital. I dyed the tips of my hair pink, pictures will follow.
Rena

HOME!!!!!!!

We are finally home.  After almost 2 months in the hospital Rena was finally discharged this afternoon. 

Rena-Lisa Superstar!

Rena had an awesome day in physical therapy today.  She walked a few feet on her own using a walker and pushed herself in a wheel chair for quite a ways.  It was really wonderful to see. 

Drawing by Rena

This is a drawing Rena did last January. Her art teacher at Clague submitted it for a show at the UM in the Art and Architecture building.

Continued Progress

We finally seem to have a handle on the nausea.  Rena has been feeling much better the last 2-3 days and has a much increased appetite.  Her arms and hands have gotten much stronger and she is beginning to work on some crafts, which reduce the tedium of being in the hospital.  She has not required oxygen for several days, except during physical therapy, and so the main obstacle to going home is her reduced mobility.  She is making significant improvement every day and we hope that she will be mobile enough to go home in a few weeks. 

The battle with nausea...

Rena is making real progress with physical therapy.  She has transitioned from exercises that were focused only on arm and leg movement to those that help with balance and core strength.  It is very difficult for her and is not helped by the fact that she has nausea about 90 % of the day. The doctors are trying to manage the nausea, but it is a complex problem and it is not clear what exactly is causing the nausea. 

For entertainment we are working our way through the first three seasons of "Bones", which were given to Rena as a gift from Nate's sister Melissa.  Although it is very morbid, and pretty disgusting at times, it is Rena's favorite show.  She wants to be a forensic entomologist.  For anyone who has seen the show, Rena's favorite character is Hodgens, who uses his disgusting knowledge of bugs and slime to solve murders. 

All that and a bag of chips..

Rena ate a bag of small bag of chips last night!  It was very exciting because she was able to and wanted to eat solid food (nausea is often a problem), but also because she was able to eat them with out any assistance.  Her hands are a little shaky, but she was able to get all the chips into her mouth on her own.  This was a real milestone.

Today the PT and OT therapists brought Rena down to the therapy clinic for a tour.  Getting in and out of the wheel chair is a little painful, but once she is in the chair she seems to do pretty well.  With the help of some special arm supports on the wheel chair she was able to paint a small bird house.  She is looking forward to bringing it home to join the hummingbird and finch feeders that Papa got while he was visiting.

Rena has found her voice!

Rena is doing very well.  She is able to speak much more easily.  Her mobility is improving as well.  She can wave her hand, scratch her own nose, and make small movements with her legs to get more comfortable.  She will continue with physical and occupational therapy this week.  Although it is very tough for her, it is nice to see that it is working.

Rena has had several visitors to brighten her spirits.  Thursday a therapy dog came into the room for a short visit.  On Saturday some former UM/NFL football players stopped in and took a picture with Rena.  Nate's aunt Rita came for the weekend and gave Nate and I a much needed break together for a few hours Saturday and again today.  My aunt Linda and Uncle Jim, and cousin Karen stopped in to stopped in to say hello.    We all enjoyed the company and change of pace. 

Back on 7 and making small improvements

We are back on the 7th floor and out of the ICU.  Rena is continuing to make small improvements.  She is able to speak in whispers and her mobility is improving.  However, we expect to be in the hospital for some time yet, mostly because she will continue to need physical therapy.  Her lungs are improving significantly, but she still requires oxygen through a nasal cannula. She sleeps most of the time and is really only able to watch movies or TV when she is awake.

Recuperating

Rena is doing well.  She has transitioned from pressurized mask (such as used for sleep apnea) to regular oxygen mask, and today is getting oxygen through a nasal cannula. This transition is important towards getting her back to the regular cancer ward and then home. She is experiencing a peripheral neuropathy and will require physical therapy every day for a while. Today was her first real day of physical therapy and she got quite a work out.  The neuropathy means that for now she is unable to do simple things for herself, such as scratching her nose etc., and so Nate and I have been on the job helping her to be more comfortable.  This is a temporary condition and she has improved a lot in the past few days already.  Today was the first day that she wanted to watch T.V. I never thought that would be a good thing, but it is nice that she is comfortable enough and alert enough that she can be distracted.

Extubated!

After 2 long weeks on a ventilator, Rena has finally been extubated.  So far everything is going well, she is breathing great, and getting plenty of oxygen. She is having trouble speaking because her throat is sore from the tube. She is still pretty weak and we are helping her to  move her legs around to keep them flexible and get things circulating. We continue to read to her to try to keep her spirits up.  She is very relieved to be free of the tube and is mostly resting.

Sleeping Beauty

Hello everyone.  Rena is doing very well.  They are very very slowly dialing back the sedatives and the ventillator parameters and she is responding very well.  Today she has been responding to some of the things Nate and I say to her or to irritating things that nurses and doctors do (like giving her a bath etc). Mostly she makes facial expressions and she even squeezed Nate's hand.  She opened her eyes briefly, but it is not clear that she registered us.  These are all good signs.  It is very heartnening to see little bits of her personality coming through. 

Baby Steps

Hello everyone.  The doctors have begun taking baby steps toward removing the ventilator (extubation). This is a slow and careful process since Rena has been on the ventilator for so long.  Essentially they will slowly adjust the parameters on the ventilator so as to test Rena's ability to breath un-assisted and to give her breathing muscles some exercise. So far she is responding very well, but this process will take a few days at least.  We also expect that she will remain in the ICU for some period of time after she is extubated.  Her muscles are very weakened from dis-use and she will need some physical therapy which will start as soon as is  possible.  We thank you for your continued prayers, positive thoughts, and support as we begin these cautious steps toward recovery. We will keep you posted.

Gradual changes and patience....

Rena is gradually improving, but it is slow going.  Every day her X-rays look better, but there is still more improvement needed.  We are doing our best to be patient and stay positive. 

Making progress

Hello everyone.  Rena is making progress.  Her chest X-rays have shown improvement both yesterday and today.  We understand that with this particular pneumonia the recovery is gradual.  Rena is doing well and improving, but she will still receive respiratory support for a few more days at least.
Also, please refrain from sending anything to the hospital.  Although we appreciate the thought, her room in the ICU is very small. Please continue your prayers and positive thoughts.  They are very much appreciated.

Holding down the fort

Hello everyone,
There isn't any significant news to share this morning.  The important thing is that Rena is stable.  We are patiently waiting for a break through or improvement from the antibiotics etc.  However, there is no way to know in what time frame this will occur. She will remain intubated and sedated until there is significant improvement.  You should all expect that we may be in the ICU for a while.  We will be sure to post when anything noteworthy occurs. 

Again, Rena is receiving very excellent care here by teams of doctors and nurses.  It is nice to know that so many hard working and intelligent people are focused on Rena's recovery.  We are very fortunate to live near such an excellent hospital. 

Thank you for the prayers and positive thoughts.  It is important that we all continue to send positive energy Rena's way.  We talk to her as much as we can, Nate is reading to her, and we are playing her favorite music for her. Although she is sleeping, we understand that she will remember some things that were said to her etc. I will go in shortly to turn on Ellen, which is one of Rena's favorite televisions shows.

Finally, a Diagnosis

Rena has been receiving continuous care and has been treated with a cocktail of medications to carpet-bomb most of the possible culprits (bacterial and fungal).
Luckily, we finally got a positive result back from one of the cultures, so we know what type of pneumonia she's up against. That has allowed the team to target the specific bacterial infection responsible for her respiratory distress. This is good news, since without knowing specific details about the cause of her condition, they can really only treat her symptoms and also give her a wide spectrum of antibiotics.

So the prognosis is good for now, but there is probably going to be several more days in the ICU.

I've started reading the book, "I am Number 4" to Rena. We're up to chapter 7, and just learned about the mysterious "lumen" (not to be confused with the candela; the SI unit of luminous intensity).

ICU

Rena has had some respiratory issues since yesterday and a chest x-ray confirmed pneumonia. She has moved to the ICU and is receiving continuous care.

Since we've got a lot to deal with right now, we're not taking calls at the moment. We know that you will all keep Rena in your thoughts and prayers and will send her some healing thoughts.

Once again..in the hospital

It has been a tough couple of weeks.  We are back at the hospital today.  Rena has a fever and low white blood cell counts.  She is resting now and we are happy to be back in the care of our friends here on 7 Mott.  We will let you know when she is released.

Taking it easy at home

Rena was released sunday afternoon and has been taking it easy at home. 

Rena is in the Hospital

Hello everyone,
Just a quick note to let you know that Rena is in the hospital.  She had a low fever yesterday and with low white blood cell count it is a routine precaution to admit her.  She is doing very well and expect to go home tomorrow. 
thanks,
Ginger

Rena is 12!

Hey everyone!  Thanks for helping Rena to have a great 12th birthday.  Although she had to spend the actual day at clinic the nurses made it a special day by a surprise singing happy birthday to her. We started celebrating at home Thursday night and continued until Sunday afternoon, when she had a tea party with two of her good school friends.

Transitions

Hello everyone! We are making some transitions this week:

Rena has started working with a tutor here at home to keep up with her school work.

We are enjoying the company of my father who is here for an extended visit to help with Rena. Rena is enjoying cooking for him and he and Nate are playing a lot of table tennis together.

Rena cut her hair to a layered cut above her shoulders. She is losing quite a bit of hair, but still has more than I do! :) I guess it helps that it was really thick to start with. The short haircut makes the hair loss more manageable. The new cut looks really cute on her.

This week Rena begins a new phase in her treatment, which means new medications (some of which Nate and I will administer at home), and some scary new procedures for Rena in the clinic. Rena is a resilient kid though and is generally in good spirits. Mostly we are glad to move on the next phase because it means things are going as planned.

We finished reading "I am number four" and Rena is spending a lot of time reading "Breaking Dawn" on her own and with me. No new knitting projects this week, but Rena has made it outside for some fresh air and some short walks. We have also tried a bit of yoga and some breathing and meditation.

Most importantly Rena turns 12 on Friday! We have lots of fun things planned for her. She is looking forward to a tea party with a few of her school friends on Sunday.

Thanks everyone for the support!
Ginger

Kindle carrying-case knitted by Rena

A good day at the clinic

Hey everyone!  I guess all your prayers and positive thoughts are working.  We had a pretty good day at the clinic today. We kept Rena busy with plenty of food to occupy her during the treatment and we were on the road home enjoying a little sunshine  by 2:00 pm this afternoon.  She is tired and feeling a little icky, but she watched "Man vs. Food" right away when we got home and that perked her up a little.  We are taking it easy for now watching some "Gilmore Girls" and I'm off to cook up some Aebelskivers per Rena's request in a few minutes.  We are looking forward to a relaxing weekend and seeing Papa on Sunday night.

busy week

We've had a busy week.  Rena has been knitting a scarf with some beautiful yarn that Marylin sent.  She is going to give it to Nate.  She continues to have a great appetite and is dreaming up new recipes all day long. I started back to work this week on a limited basis.  I am going to campus only when I have lectures and meetings.  Rita stayed over Monday to help out and Nate and I have been juggling our schedules so that someone is always with Rena.  My father arrives this weekend for an extended visit to help with Rena. Tomorrow we have another day in clinic.  It should be a shorter day and we are glad of that. Thank you for your continued support.

Also, Rena's fireman friend from Washington state was 35th out of 1500 fireman racing to the top of a very tall building in downtown Seattle (in full gear).  He raised a lot of money for Leukemia research on Rena's behalf and we are very grateful for his efforts.

Fun Weekend

This weekend we are enjoying a visit with Nate's aunt Rita.  She drove up Saturday and spent the evening decorating cupcakes with Rena.  She and Rena have been scheming together about what delicious foods they can cook.  Rena's appetite is still going strong.

Long day

Our second Friday at the clinic went much better today.  It was still a very long day, but we expected that.  Rena was much more comfortable and everything really went a lot smoother.  Thanks for all the positive thoughts and prayers.

Another Treatment Tomorrow

Today Rena had a visit from her math and science teacher.  He brought all of her things from her locker and a few great books for Rena to read.  He also brought some cards from her classmates and she was really happy to read them. It was a nice visit. Soon we expect to have a regular tutor to help Rena keep up with the important things.

Tomorrow we will visit the clinic again for Rena's chemotherapy treatment.  Now that we know how things work at the clinic we will be better prepared and are really hoping for a more positive day. Please send us your positive thoughts tomorrow!

Tuesday

We've had a couple of pretty good days.  Rena's appetite and strange cravings have continued.  Rena has tried various recipes with mashed potatoes and other ingredients like barbecue sauce.  When she isn't eating she is thinking about what she wants to eat next.  She seems to do pretty well during the day, though she is getting sick of being stuck at home.  She is tired out by the evening and tends to feel things more.  We are tying to get into a routine and will get her started on her school work again soon. Rena and I are reading "I Am Number Four" (from the upcoming movie) and it is turning out to be a great book.

Also, a firefighter from Washington state is climbing in Rena's name during a fundraising event for Leukemia research.  If you want to learn more:
http://www.llswa.org/site/TR/Events/General?px=1088182&pg=personal&fr_id=1161

Macoweeni and Peas Sandwich

Good Appetite

Rena has an amazing and strange appetite today.  She started the day with oatmeal and a hard boiled egg, moved on to chicken noodle soup after about an hour, then smoked salmon, and now macaroni and sliced hot dog sandwich.  For the latter she requested a hot dog bun on which to place her macaroni and sliced hot dogs (keep in mind - Nate and I are vegetarians).  She calls it her macoweeni and peas sandwich. 

Post Day 8 Treatment

Day 8 was rough. It was a very long and difficult day for Rena.  Every child responds to the treatments a little bit differently and we are working with the doctors and nurses to minimize Rena's discomfort based on her specific response to treatment. We are told that this first period will be the most difficult and that things will improve with each visit.  For now exhausted Rena is sleeping peacefully.  We have a whole week until her next treatment and are very glad she will have several days to recuperate.     Her appetite returned this morning and she was able to eat a hard boiled egg and oatmeal.  She demands her hard boiled egg and oatmeal every morning.  It's really cute.

Day 8 treatment tomorrow

Rena has just gone to sleep and we are planning for a big day at the outpatient Cancer Clinic tomorrow.  There will be more tests and other not so fun things happening, but the clinic is designed especially for children and we are sure Rena will receive excellent care just as she did during her stay.  It's tough for Rena to think about going back after only a few days at home.  Please continue to keep her in your prayers.

It's good to be home

It's very nice to be home.  Rena is doing pretty well and is able to relax in a way that just wasn't possible in the hospital.  She is being a real trooper and taking all of the icky medication when asked.  Her throat is becoming a little sore, which happens with some of the chemotherapy agents, and she is feeling somewhat achy and tired. Rena is taking it easy today relaxing on the couch and watching some of our favorite TV shows that we missed while in the hospital this week. I'm busy trying to organize the 20 pounds of hospital paperwork and taking care of a few things around the house.

Headed Home TODAY!!!

We are all very glad to be heading home today and right now we are trying to be patient as the discharge papers go through.  Thanks to Marylou and Nate, Rena will have a very clean bedroom and bathroom to come home to.

We will have a few days rest at home and return to the clinic on Friday for additional treatment. We are overwhelmed by the love and support of our friends and family. Thank you again!

Post by Rena

Hi!  I'm glad to be going home tomorrow because I'm tired of having tubes constantly hanging from me. I'm glad to be going to bed because I'm tired. Thank you for the gifts and balloons and prayers and messages. 
Rena

Goodbye Blasts!

Something that we're realizing is that we need to become proficient with understanding Rena's bloodwork. We receive the blood results each morning and we have started charting a variety of blood counts. These include: white blood cell, hemoglobin, platelets, absolute neutrophil count, and blasts. Each of these give us an indication of how Rena's body is responding to Chemo, and where her immune system is at.

This morning we were happy to hear that the Chemo, which started a few days ago, has decreased the blast count (or immature white blood cells) by 89%. Were hoping to have them down by 100 % tomorrow, and if that happens (and a few other things look stable) we can finally come home from the hospital.

Day 2

Rena is having a better day.  However she is alternating between being very sleepy and very nauseous.  Nate and I have started keeping a detailed journal of all the medications and how they effect Rena so that we can help the doctors find the right balance.  We already know which are our favorite nurses and Rena is speaking right up when she wants them to do things a certain way.

The hospital room is filled with presents and balloons which have all helped to keep Rena cheered up - thanks again everyone.  Nate's mom brought a large framed picture of Nate, Rena, and I at Christmas time and we've hung it on the wall.  She has her special cow boy blanket on the bed as well.  We are doing our best to make her comfortable.  

Hoping for a good day tomorrow so that Rena can relax and revive her spirits.

Day 1 of Rena's Chemotherapy

Hello Everyone!  There are so many people that love Rena!  So I am starting a blog to help communicate with everyone as much as possible.

Yesterday Rena went into surgery to have a central line put in so that it will be easier to administer the chemotherapy agents and to draw blood.  She spent the night recuperating from that.

Today Rena is beginning her first day of Chemotherapy.  The doctors are following sophisticated treatment plan that will last over a year.  8 months of which will be more intense, but after that it will be maintanance.  The drugs seem mostly to be making her feel very tired and a bit icky. 

Rena is in a very excellent hospital.  She could not receive better care.

We are grateful for all of the well wishes, notes, messages, balloons, presents, and most of all your prayers. They mean alot!