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. 

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

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 :-)

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!!!!!!!!!!!!

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.

Chemo Round #1

After a bone marrow biopsy confirmed that cancer is now in her bones, Celeste started her first round of RICE chemotherapy on Thursday 2/16. RICE is a more aggressive chemo than the RCHOP that she had 6 rounds of last year. RICE is an acronym for 4 medications used over 4 days. On the first day Rituxan is used. For 3 subsequent days Ifex, Cisplatin, and Etoposide are used each day. She finished her last day of this round of  chemotherapy yesterday. She will stay in the hospital and be supported by transfusions and antibiotics until she hits her nadir (low point) and her blood levels start to climb back up. She hasn't had a fever for a few days. That is huge! She continues on 4 IV antibiotics, an antiviral and antifungal. She is still coughing but not as uncontrollably. Oxygen and an inhaler have been the most help.

Today she felt well enough to take a walk around the ninth floor. Her spirits are good. As we sat and looked out a big picture window at the beautiful snow covered mountains she wondered what people do who do not have so many people praying for them. She feels very supported by your prayers. Our whole family feel the strength and blessing of all your love and prayers.

The plan for the future is a second round of RICE chemo and then a 3rd round of chemotherapy in the bone marrow transplant unit at LDS Hospital in preparation for the transplant. We don't really have a time line for that because it will be driven by how fast she recovers between chemo sessions and can be ready for another.

News

Well, the past month has been interesting.  I saw an immunologist, but she still wants to take more tests before she can decide anything.  Also, I have some bad news........I've not been feeling well the past couple of weeks and we all thought I had the flu.  I saw a doctor at Utah Cancer Specialists on Tuesday, and he gave me some antibiotics for all of the fevers that I was having and a blood transfusion cause my hematocrit was low.  That night I woke up twice because my heart was racing and I was really dizzy.  It lasted for a few minutes each time.  Wednesday night, the same thing happened five times.  I had been checking my pulse when these episodes occurred and the highest was 118.  After the 5th time it happened (@ 3:00 am) I called the on-call doctor at UCS and explained the situation. Plus, I was still having fevers.  She told me to go to the ER.  That was Thursday morning.  They admitted me to the hospital (IMC again) and have been running a bunch of tests.  It seems that I have an infection that has been driving my blood counts really low, so they're giving me antibiotics for that.  The really bad news is........I am no longer in remission.  The lymphoma came back and the scan is worse than the one they did last July.  I will have to start chemo again, and maybe on a different regimen than before.  They will also most likely do a bone marrow transplant this time.  I took the news pretty hard at first, but I want you all to know that I'm still fighting and that this isn't going to take before I at least give it a good fight.  I'm really hoping that the bone marrow transplant will help.  Basically all I ask from all of you is what I always ask for: PRAYERS.  I'm gonna need a lot of strength to get through this.  Thank you.