Wednesday, March 28, 2012

Tumor Board Decision

Thank you all for your prayers!  Celeste still has a long way to go, but this morning she was alert, not vomiting or feverish, and even went for a walk around her hospital floor.  She is still struggling to get enough nutrition though, she has little appetite and doesn't like to eat.

Celeste was given chemotherapy all through last night, but her noon treatment today was postponed until the Tumor Board finished meeting.  Update from doctors after discussing Celeste's case again today:

- She will continue to be treated with steroids that have helped in the past to control her symptoms.
- She will be given two new types of chemotherapy that are still in clinical trials, one starting today and the other later this week.  
- Her transplant team is pursuing both a registry donor and umbilical cord blood, whichever lines up best/1st.

The Tumor Board determined that the two new types of chemotherapy they will treat her with is the best option for Celeste's cancer, considering how it has responded to previous treatments.  Since her Lymphoma has never fit into any category for type and treatment, this is the best option we have available.

Cord blood had not previously been discussed as an option because her transplant team thought they had enough time to get a donor, but umbilical cord stem cells have not been coded to a host yet and can be transplanted successfully.

Celeste's doctors are monitoring her closely during the new treatments and working quickly to get her a transplant.  Their goal is to get her Lymphoma at least in a downward trend with chemo before the transplant to give it a good chance of success.  She has faith that she can get through this!

Tuesday, March 27, 2012

Prayers Tonight Please

Celeste had a CT scan yesterday that showed the lymphoma that was killed by the last treatment grew back.  After spending most of yesterday in the LDS Hospital outpatient Blood/Marrow Clinic for testing, Celeste was sent home with portable oxygen and a home oxygen supplier was sent to the house.  After being home for only a couple of hours, Celeste vomitted all her medication and spiked a fever, she returned to the hospital late last night. 

At about 8:00 tonight, Celeste will be given another round of chemotherapy.  Her doctors are concerned about her cancer cells being immune to treatment, especially when so much chemo has been admistered recently - they told us this has a small chance of success.  Celeste has continued to feel that she needs to fight this cancer and move forward with her life - she feels that she will get through this, but she especially needs your prayers and faith tonight.  Miracles do happen.  Please pray that the chemotherapy treatment will work, and that her transplant team will be able to get one of her matched donors here quickly, it is taking too long. 

Thank you for all of your love and support.  

Sunday, March 25, 2012

Going Home!

"After much deliberation, the doctors finally decided to let me go home Saturday afternoon.  I love being home with my family and cats - the only thing I miss from the hospital is eating a popsicle every morning lol. Just as I was leaving my room, several of my music therapy friends came to visit me after the Western Region Music Therapy Conference that was held in Salt Lake that day.  It was so nice to see them, and I'm glad they caught me in time.  The sang me a song, and sent me their love and everyone elses up at school.  I hope to one day be able to sing as well as they do again.  Now there's a good goal!"

"I'm doing much better.  I can walk on my own now, and I'm not attached to an IV pole, which is very nice.  I still struggle a little bit with eating, but I like to believe that I'm getting better in that area daily also.  I am much more alert and talkative than I was when I was in the ICU and immediately after.  I'm sleeping more, which my nurse said is a good thing, because my body is healing."

"I will be returning to the hospital this weekend for one more round of chemotherapy before my transplant.  Hopefully I will only be there for less than a week this time, since I am getting stronger and have no infections to set me back.  The bone marrow team is still looking for an exact donor, but I have more than 90 options, so I am well off.  Thank you all for your continued love, support and prayers, they mean a lot to me."

"Here are some pictures of me with my Music Therapy friends on my way out to the car to go home."





Thursday, March 22, 2012

Bone Marrow Unit

Celeste has now been in the bone marrow unit for a week.  She is doing better every day, she's even down to only two IVs on her pole and no more oxygen!  She goes on walks daily around the unit with a physical therapist, and yesterday started doing some strengthening exercises as well.  Her voice is stronger, she can speak longer and with more volume, she sang along with Mulan today.  She's also getting ready to start her next big cross stitching project.

Her focus right now is to eat.  We've been coaxing her with favorite foods, and her doctors have started adjusting how much nutrition she gets through her feeding tube to help her have an appetite.  Once they determine she is able to maintain adequate nutrition without the feeding tube, she will probably be able to go home until the next chemo treatment. 

Here are some fun pictures from her walk today and physical therapy.  We are enjoying seeing her smile again!  She wants everyone to know that she is doing better every day, and will make it through this.

                                              "Racing" past the vending machine on her walk.
                                              Balancing exercises with a beatiful window view.
                                                      Fake punching the physical therapist :)

Friday, March 16, 2012

No More ICU!

From Celeste:

"I'm out of the ICU now, back on the 8th floor/bone marrow transplant unit. The worse part of the ICU was the breathing tube. The best part was the nurses! They might be able to let me drink soon. I really want grape juice and some flat cherry coke. My cough is better. My chest xray was good this morning. I love not having fevers!!! I hope I get well enough to do the transplant without complications."

Celeste has been in the bone marrow transplant unit since Thursday afternoon.  She is still struggling with nausea, but it's lessening each day, and her caugh is getting much better.  She has been able to keep her white blood cell count up, and her doctors are pleased with how the chemo levels in her blood have been dropping since she finished this round.

Today we got test results from having Celeste's siblings tested to be her bone marrow transplant donor - sadly, none of them match.  But, we were told that there are over 90 matches on the donor registry.  Celeste's doctors will continue to monitor her blood to determine what, if any other chemo treatments are needed before her final chemo just before the transplant.  Celeste and her family have been so blessed during this trying time by all of your prayers and support, thank you everyone.

She'll make it!

                                                             Moving out of the ICU, yay!

Wednesday, March 14, 2012

More ICU

Celeste is still in the ICU at LDS Hospital, but she is breathing on her own now, her ventilator tube was removed Monday afternoon.  She remains on oxygen support, but she can rest much better now that the tube is gone.  She had a brief respite Monday before starting chemotherapy again - Tuesday she struggled with nausea and vomiting from the chemo, but she woke up feeling much better this morning. 

This round of chemotherapy is different than what she has had before, it is designed to target the cancer without harming her white blood cells or platelets so her body can continue to fight infection.  The doctors decided to move forward with more chemo sooner than later after determining that her fevers and inflammation were being caused by the cancer, not by the infections she's been fighting.  We were concerned that chemo is a lot to ask of her body right now, but it has already helped, she hasn't had a fever for two days. 

Last night Celeste started talking again - she had a conversation for a few minutes with Dad, and was able to communicate with the Stake Presidency when they came to see her, she asked for a blessing.  This morning she is talking more and her sense of humor is here, she has been teasing her nurse. She has quiet times when she is huddled inside just hanging on, but she can still flash that smile. She is still struggling with nausea, but her feet are less swollen and the pain in her abdomen has subsided, yay!  The next step will be to move her from the ICU to Oncology when she is ready.  Thank you all for your prayers, we can feel and are blessed daily by your support. 

Sunday, March 11, 2012

ICU update

The issue that is keeping Celeste in the ICU is her breathing. She remains on the ventilator. She is breathing on her own but continues to require a significant amount of positive pressure (her PEEP is 12) . Her edema is worse. There is enough swelling in her legs and feet now that it is painful to walk on them. Physical therapists get her up to walk twice a day. At midnight her white blood count was 7.3 . They are giving her a bag of platelets right now.... her count was 47 and if it dips below 50 they transfuse.

Her other challenges are more elusive. She continues to spike fevers regularly. She has unexplainable pain and swelling in her abdomen. Yesterday in their attempt to trouble shoot this issue she was taken to nuclear medicine and had a special scan of her gall bladder called a HIDA. It did not confirm the problem they were theorizing could be contributing to her pain. The swelling of her liver and spleen still contribute to her distended belly. They are using her feeding tube for medication only. She is still being supported by IV nutrition.

All in all she is doing much much better and continues to charm all the nurses and supporting staff. Even though she cannot speak she always radiates peace

Thursday, March 8, 2012

LDS Hospital - ICU

Celeste was laboring more with her breathing before we made the transport to LDS Hospital. After settling into the Bone Marrow Transplant Pod the doctors ordered a CT scan - didn't like what it showed. Followed it with a bronchoscopy. Following the"bronch" she was critical and unstable and they sent her to the ICU. The following is from Shaleece's facebook page:


Hi Everyone. Thank you all for your comments, prayers, love, and support for Celeste. Here is the latest...

Dad and Mom had a meeting with the staff mid day. This is Dad's report:

- Still in ICU. Calling her critical but stable.
- She has a little edema (water retention/swelling).
- A little fluid at her heart - it has been weakened a little by the chemo.
- She's breathing more comfortably after some adjustments to her ventilator tube and machines.
- Her oxygen is about 30% on ventilator support (down from 100% yesterday. This is good).
- Air pressure is still a little high at 18 (used to keep her lungs more open to receiving the oxygen).

- Due to the bronchoscopy and ventilator, her cough is all but gone. Not the virus, just the cough.
- Her white cell count is now 2.5! Huge improvement from a week ago at .1. Still praying that this number will continue to climb, since only her immune system can kill the respiratory virus.
- Platelets are at 50, which they will now maintain at that # or above through transfusions.
- She's being filled with antibiotics and anti-fungals to kill everything.
- Her nose is not bleeding, just spotting.
- She has a feeding tube that will supplement what she can't intake orally for calorie counts.
- Fever is under control with management.

- She is sleeping a lot, which she has been unable to do with the coughing. The narcotics help take off the edge and help with her sleeping. 
- She looks visibly better than yesterday :-)

All encouraging!

She made it through the night and is feeling very well cared for by her ICU team. Her nurses are amazing :-)


Wednesday, March 7, 2012

Moving......

Wahoo! Celeste has finally begun to create white blood cells. On Monday her count was .2  Tues morning she was at .4 by afternoon she tested at .6    That is the good news!.
She is still in a very precarious place fighting the battle with her lungs and continuing high fevers. IV nutrition was started Tues. night.
   First thing this morning she will be moved by ambulance to LDS Hospital Bone Marrow Transplant Unit where they can care for her as we continue to make decisions about how quickly she will be ready for a transplant and if there will be any more RICE chemotherapy before then. The decision to use a donor has officially been made and her siblings will be tested first.
   There are many of you who have offered to donate. I do not know all of the cost or criteria for testing. I will post that information as soon as possible. I will also post visiting information. I don't know how they run the transplant unit. Please continue to pray for Celeste - She needs it and is very sustained by her knowledge of so many loved ones praying for her.
  Celeste asked me to share this:
"I say this in my head all the time - Lord grant me courage
                                                           Lord grant me strength
                                                           Lord grant me hope
                                                           Lord grant me faith
                                                           Lord grant me peace
                                                           Lord grant me understanding"
Please Lord - Grant that we may continue to have Celeste stay with us!!!!!!!!!!!!

Friday, March 2, 2012

Human Metapneumovirus

My apologies for not updating for so long. This is where you should be able to quickly check on Celeste. She has been struggling so much it is difficult to write about. After the RICE chemotherapy she remained fever free for about one week. Her platelet counts remain low and she has transfusions for those every other day. Her white blood cell count has been parked at .1 for almost a week.

 On Sunday 2/26 she had a low grade fever that we tried to explain away with sleeping under heavier/warmer blanket. By Monday she was spiking fevers into 103 and 104 degrees. CT scan on Tuesday was taken to make sure there were no pockets of infection lurking somewhere. Good news from the scan is that the tumors are responding to chemo and are shrinking significantly. No signs of infection. Weds night a Bronchoscopy was performed to suck up fluids in her lung and test/culture them. Most of those cultures and tests have not come back. The preliminary finding is that she has the human metapneumovirus (hMPV). In a child we would call it RSV.  Simply put - she has a viral pneumonia. She is suseptible because she is immunosuppressed.

She is on 6 different IV antibiotics, 2 IV antifungals, and oral antiviral. Between transfusions,  antibiotics and maintenance fluid, something is always running into her. All of these things cannot really fight the hMPV. She needs to create white blood cells to do that. Last night they ran a loading dose of IVIG (immuno globulin). It will be given to her every other day for a total of 5 doses. It is hoped this can give her a 'leg up". She also has a daily neupogen shot to stimulate her bone marrow. Today she has rested better and not had as many coughing spells. Coughing causes her to gag and vomit.  Morphine was added today to calm her lungs. It has helped but she is also very groggy. At midnight last night her fever had reached 105 degrees. Because of her wretching she sometimes looses the fever medication and it can't be replaced for a certain amount of time.

Celeste has times when she gets emotionally tired as well as physically exhausted. She is still committed to continue fighting. Robert and Pres. Pike are giving her another blessing tonight. A friend who has also fought cancer visited yesterday and left this poem with her - it expresses what we all feel!
I believe in angels, 
the kind heaven sends.
I am surrounded
by angels, but I call them friends.