Music Therapy

Good ole music therapy!

Improvement

It is Friday morning and Celeste is making some good progress!
Another chest xray shows that the pneumonia is responding to antibiotics.

Adema is slowly shrinking. 

Digestive tract is behaving better. 

White blood cells are starting to climb - it will be several days before she is off the restrictions that protect her from low white blood cells.

 

Platelets continue to be an elusive battle. Yesterday, after three transfusions, she went from a platelet count of 3 to 38. We were very encouraged .... that is the highest she has been since entering the hospital. This morning her count was back down to 4.  ;(  The testing they are doing on her blood should be back soon. 

HLA testing (human leukocyte antigen) helps them match her platelet donations more closely so that her body doesn't reject the transfusions.

 

Overall, Celeste's spirits have been improving since Wednesday. It looks like we will be

in the hospital at least through the weekend. We are very grateful to be here receiving such excellent, specialized care. 

Something to Make you Laugh

Mom - turning her beeping cell phone off -

"I am going to put you to sleep so I don't have

to listen to you die anymore!"

 

Celeste - from hospital bed -

"Taken out of context that sounds really bad!"

Routine Walk in the Hall

Celeste wearing a mask standing next to her favorite picture. Her white blood cells are now low enough in the chemo cycle that she has to protect herself when walking in the hall. Her favorite picture reminds her of brownies with a river of milk running through it!

So Blessed

 I am having a tearful moment feeling overwhelmed by all the love of ministering angels! We have so many people lovingly caring for and  about Celeste, at home, here at the hospital, our Ward family and friends, our extended family, friends in Alaska and close by. We are  being blessed by your prayers and your service! Thank you and God bless you!

-Christi Poll (mom)

Family Home Evening

Playing Go Fish with her younger siblings for FHE

Hair Cut!

Celeste has said that she is kind of excited to be able to shave her head. Most of us girls have complained about having to take care of our hair and have most likely threatened once or twice to just shave it all off. Celeste actually gets to! But before that she wants to help others with cancer and donate her hair for a wig.

Pictures of cutting her hair:

mom braiding her hair so it's all in one piece to donate.

Celeste's sweet cousin Angie who volunteered to cut her hair

Beautiful!

Donating Blood

For those of you who wonder what you can do to help Celeste, donating blood would be much appreciated. Since Celeste is needing platelet transfusions it is suggested that friends and family take some time to donate to keep the supply up. You can't donate to a specific person but your donation will make a difference. To help shed a little more light on the need of a large supply of platelet and blood donations here is  another story of a little girl who is in need of many platelet transfusions.

Emily Emily Myers received her first platelet transfusion when she was just minutes old. By her third birthday, she had received about 80 transfusions, and she is expected to receive more as she gets older.   The daughter of Brooke and Jim Myers of Tucson, Emily was born with the rare genetic condition thrombocytopenia-absent radius (TAR) syndrome. The disorder is characterized by extremely low levels of platelets. In addition, TAR syndrome patients may have abnormalities in the gastrointestinal, skeletal, hematologic and cardiac systems.   Emily received one to two platelet transfusions per week for the first two months of her life. She now gets a transfusion about once a month. The low platelet count in TAR children can improve with age to the point that transfusions are no longer needed. Until Emily reaches that point, Brooke wants to spread awareness of the need for platelet donors. “She has helped us recruit new platelet donors this past year, including two of her brothers-in-law.  Brooke has really helped inspire me ...she is just a wonderful and caring person all around,” said Stacie Baier of the American Red Cross.   Schedule your appointment now to donate blood or call 1-800-RED CROSS.

redcrossblood.org | 1-800-RED CROSS | 1-800-733-2767 If you have questions regarding your eligibility to donate blood, please call 1-866-236-3276 or visit their website.

Platelets

Normal platelet ranges from 150 - 400. When Celeste was in the hospital at the beginning of July her platelets were at 40. This was due to the lymphoma. That is not a good level but not an alarming level. When doing chemotherapy, a persons platelets will drop low between 6 -10 days afterward. Because Celeste is in the hospital they check all of her blood counts daily. Her white and red blood cells are recovering well from the chemo treatment. On day 4 (Sunday) her platelet count was 12. Since Sunday morning they have given her at least 2 bags of platelet transfusions a day, sometimes 3. After a transfusion the platelets will rise to 25 - 28 and then within a few hours drop again. Monday night they dropped to 7. Tuesday night they went up to 22 and dropped back down to 9 this morning. They have told us that one of the things keeping her in the hospital is her platelet level. This morning they explained to us that it is her spleen that is causing the problem. It is so enlarged that it is gobbling up all the platelets they give her or she trys to make on her own. We have not met with the Oncologist today to determine where we go from here.

Good News!

 Okay... Today has been a bit of a wild ride! Celeste really does feel and look like she is in a fat suit they use for actors! we will spare you pictures! 

Good News: they can see in the scans today that Celeste is responding to chemo! The masses she has are already shrinking! The swelling today is a combination of the Tumor Lysis overwhelming her system, massive doses of prednisone which contributes to swelling, and low protein in her cells. She has plural effusions which means there is fluid between her lungs and chest wall making it very hard to breathe!
Treatment=  Lasix/diuretic to slough water out of cells. 

Swelling

Celeste is still in the hospital so the doctors can keep an eye on her as the Chemo is kicking in. This morning they found that her whole abdomen is swollen and is continuing to swell... her legs are now involved. The nurse says she doesn't think it is an allergic reaction. They are going to do an ultrasound on her legs and a CT scan. We're praying everything is okay and that she will soon be able to go home with fewer complications.

Getting some rest

Getting some rest in her comfortable home before heading back to the hospital. 

Smurf

I'm a smurf! this is the cleaning agent they used for my port surgery... can't shower for 24 hours.

Donald Duck

"I am Donald Duck! Just think about it.... He is so cute and funny but all the bad stuff happens to him!" he he he

Checking out the blog. Either she is tired or she doesn't like it ;)

Celeste and chemo.... Before she falls asleep from the megadoses of Benadryl they are pumping into her....

Chilling...zzzzzzzz

The start of Chemo

As of 12:38 this afternoon Dr. Harker (the Oncologist) had left. Because Celeste was already breaking down cells (seen from blood work this morning) and chemo will accelerate that process they needed to be admitted to the IMC (intermountain medical center). They will keep her flushed with fluids and bring her calcium down to protect her kidneys.

They found that Celeste has Tumor Lysis Syndrome. This means the body is recognizing and breaking down cancer cells too fast. It is too hard on the kidneys. To treat it they have to give her IV fluids.

Final diagnosis

After being diagnosed with Lymphoma cancer at the end of June Celeste went in for a biopsy July 4th. The biopsy was for the doctors to know exactly what they were dealing with and how best to treat it. Finally last night they received the results and Celeste was able to start chemotherapy this morning.

It is non-Hodgkin Lymphoma at a stage 3. It is a stage 3 because it does not involve her bone marrow. 

The final diagnosis: Atypical lymphohistiocytic proliferation, consistent with a B-cell lymphoma with plasmacytic differntation, not further classifiable.  

They will be using RCHOP for 6-8 sessions with bone marrow evaluation at the end. Today they used an IV site in the arm but will implant a port near her collarbone for future treatments.