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Journal entry by anne kolenic

Casey had many appointments today-blood work, doctor, bone marrow, Stem Cell Transplant (SCT) team. Lots of positive news and updates today.
1-Blood counts all good. Platelets are actually above 200,000 (normal is between 150,000-400,000!), white counts are up and red are holding steady.
2-Bone Marrow from last week (day 21) showed that her blasts (abnormal cells) were down to 9% -they had been over 85% upon diagnosis. The biopsy also showed that she was making her own good cells.
3-Bone Marrow biopsy went extremely well today. Casey did not need any medication other than numbing and she did very well. Sample was very easy to get. Doctor is pretty confident that these results will come back showing her in remission (blasts less than 5%). Should have confirmed results by Friday.
4-As long as BM Bx shows remission will get chemo next T-TH as an outpatient.
5-Micki has tested as a 13 out of 14 match!!!! they will still test the other siblings to see if any are a 14 out of 14 match. GREAT NEWS!!!
6-Met with SCT team to keep plans moving for transplant. The plan will be to move forward with this after she recovers from next chemo and things are set with a donor.

Lots to be thankful for today. God is good. Love to all!
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Journal entry by anne kolenic

Well Casey's bone marrow is making some good cells and her infection is almost healed. She had a blood check done Saturday and her counts were all high enough for NO transfusions!!! Today she met with a new doctor closer to her house where she can get future blood work done when needed and avoid a few of the long trips to MD Anderson.

Today was the blood drive organized by her friends and colleagues at Clear Brook HS. Casey was feelibg well enough to stop by and see it in action. There were over 200 people registered plus walk ins. When she was there at 2pm they had already shipped off over 150gallons of blood to MD Anderson. WOW!!!! That is so impressive and overwhelming. A huge shout out to her Clear Brook family, so blessed to have you in her life💖. the blood drive not only helped Casey but so many others in the Texas area who need transfusions. Invaluable and life giving donations by all who participated today. Thank you from the bottom of our hearts. (Pictures below from the drive)

Tomorrow will be a long day of outpatient appointments. She sees Dr. Bose, her oncologist, gets blood work, and her day 28 BM biopsy. Preliminary results of day 21 BM bx. looked good, but will wait for tomorrow's results to see when next chemo will be.

Love you all and tbank you for the continued good wishes, thoughts and prayers.

Journal entry by anne kolenic

Casey came home this afternoon!! Feeling okay. Tired, headache, and a little nausea but all things that a nap helped.

For those who missed it, she did have Mike shave her head tonight live on FB( see picture below). It was falling out and becoming annoying so she got rid if it. She feels much better tonight.

Her blood cell counts continue to go up. She will go back on Saturday and Tuesday for outpatient appointments for count checks and supportive care.

Journal entry by anne kolenic

Well good news today-Casey is scheduled to be discharged to home tomorrow. Her infection is clearing up nicely and her counts are starting to come up from the chemotherapy. She still tires easily and needs blood and platelets till her counts stay up on their own, so she will go back to the outpatient area every other day. They were able to do her BM bx. today. She said it was definitely better than the other two she has had to have (still not fun, but not awful like the others).

The other news she did get back today is that the genomics (chromosome) tests finally came back and based on the findings, she will need to eventually have an Allogeneic Stem Cell Transplant (SCT). This is not emergent and the timing will depend on how she responds to this chemo and the next. Casey and Micki met with a member of the SCT team to begin the process. All of her siblings will be tested to see if they are a match. Full siblings (same mom and dad) have the highest probability of matching. Micki completed her screening today and others will be done soon. Casey and Mike will have a more in depth meeting with the SCT doctor and be given more detailed information over the next few weeks.

If none of her siblings are a match then the team will look in the Be The Match Registry, run by the National Marrow Donor Program. No need for anyone else to get tested at this point on Casey's behalf (although the registry always accepts more potential donors for cancer patients across the country at anytime!).

Lastly, Casey's hair has started to come out so she has decided to take control herself and will shave her head tomorrow. Her plan as of now is to do a live video on Facebook at some point tomorrow. She wanted to give everyone a heads up (pun intended)😂 !

Wonderful night to all!!
PS---Power of prayer was felt today as she woke up in much better mood, pain greatly improved, and ready to take on the day without anxiety and fear. Thank you Prayer Warriors and Positive Energy Senders!!!🙏 

Journal entry by anne kolenic

So they were having trouble scheduling Casey's Bone Marrow biopsy for today so it will be done tomorrow. They did perform her Lumbar Puncture (LP) today. This was a diagnostic LP as well as they gave her a low dose chemo injection into your spinal fluid.

She was having a rough morning, more pain from her infection and just anxious about the procedures today. Much better afternoon once she got some pain meds, LP done and took a good nap.

Say some prayers for her tomorrow for relaxation and calm prior to her BM bx.
Anne

Journal entry by anne kolenic

Its been a couple days since last update, because not much is going on. Casey is still in the hospital for minimally another day or two. They did find the source of another infection and switched her antibiotics. She was exhausted on Thursday and slept most of the day, but by Friday am she was up and about as much as she can tolerate. She has not been having too much nausea, just some pain at the infection site. No fever today, which is good news.

Jeanne leaves Sunday morning and Micki arrives in the afternoon. I have heard the rumor that Casey has all sorts of organizational tasks for Micki to complete during her stay in Texas😊 

Casey is due for a bone marrow biopsy on Tuesday (day 21) so although I know she is always in your prayers, say a few extra that day and send lots of positive energy her way and for her physician (or PA/APRN) that will be doing the biopsy.

I attached a picture of an awesome shirt one of Casey's friends had made for her. Casey was making me wait for a better pose, but I got tired of waiting. 

Love to all and God Bless!
Anne

Journal entry by anne kolenic

Casey did get discharged yesterday (4/11), but unfortunately was only home for about 8 hours before she developed another fever and had to go back to MD Anderson ER. They did re-admit her and found a new cellulitis. They changed her antibiotics around Thursday evening and are hoping that she will only have to stay another 3 days as long as all cultures come back negative.

She had a long day today and is feeling frustrated at this point. I know that everyone has been keeping her and Mike in their thoughts and prayers and we are ever so grateful for that. Please keep praying for strength and perseverance as the journey has just begun but its a long haul.

Love you all.
Anne 

Journal entry by anne kolenic

Casey had an uneventful day (thankfully). No fevers. Doctor said so far the only findings have been a UTI, which the antibiotics are working on, and the common cold. If things stay the same she may get to go home Wednesday😀

She finally was able to sit up and eat today-see picture below. She also took a much needed shower!!!

Maggie is going thru pics for grad party and look at the cute ones she found of her and her Crazy Mary....they bring a smile to my face. Fyi...for those who don't know my Maggie, she is Casey's younger cousin and is her "little tootie"

Hugs and prayers🙏💖

Journal entry by anne kolenic

No live video today, but of course wanted to update y’all...I ended up spiking a fever midday on Friday so we came back to the ER at MDA.  They were a little crowded and I was really started to feel the side effects from the chemo, so it wasn’t my best day.  I was thankful they were able to get me a bed though!  I stayed the night in the ER and then they had a room open the next day so I’m back to being nice and cozy.  Day 10+11 we don’t like of this cycle😜. They will keep me here to monitor me and make sure no fevers start back and the earliest I may be able to go home is Tuesday.  My numbers have gotten pretty low (that’s a good thing, because the chemo must be working) but I will be getting another blood and platelet infusion today.  That always makes me feel better too🤗. I appreciate all your love and prayers 🙏💪🧡.

Journal entry by anne kolenic

Well unfortunately Casey developed a fever this afternoon at home and had to go back to MD Anderson EW for evaluation. Because she has no immune system and developed the fever, they are going to re-admit her. They have started IV antibiotics and are giving her fluid.While this is unfortunate, there was a high probability of this happening. Casey is at the point in her chemo treatment called her nadir, its the point when her blood counts are reaching their lowest levels. We know that this is when she will be more tired and most susceptible to infections.

Yesterday when she was in for her appointment, they did draw blood cultures as well as she was transfused with platelets (her count was 14). For those of you who missed it, she did do another live update of her journey on FB last night. I am sorry I am not able to post those onto this site, but have tried multiple things and can't get it to work.

We are glad she was at least was able to spend a couple nights at home, eat good, and just relax in her own environment. For the next few days they will monitor her, give IV antibiotics and fluid and other supportive treatments as needed. She will also be having a CT of her head as she is also having some headaches.

As always thanks for the love, support, and prayers.
Anne

Journal entry by anne kolenic

Well Casey was finally transferred to MD Anderson this morning-arrived about 1015am. She has been in the emergency room (their way of admitting patients) since then. She has been seen by the leukemia team and evaluated.

There are currently no beds available, so she will remain in ER until one opens up. They have done a repeat bone marrow biopsy (BM bx) because they need to send out for additional tests. The preliminary BM bx appears to be a myeloid form of acute leukemia (AML). There are however different sub groups and we will not have that information back until early next week. They are going to give her another unit of blood today to help her feel a little better. She has not had a fever for over 24 hours, but is real tired.

Chemo may not start till Monday or Tuesday. The goal is to get as much information about her type of leukemia to give her the best treatment to fight it. They will continue to monitor her and give supportive treatment (IV fluids, IV antibiotics, and blood products as needed).

She remains in positive spirits, is glad to be at MD Anderson, and is ready to get this game rolling.

Will post updates as available.

Casey’s Story
Casey's newest competition actually started in early March when she became sick with a virus. As the next two weeks went on she became more fatigued and worn out. After being admitted on March 19th to the ICU and receiving blood, she was then diagnosed on March 22nd with Acute Leukemia. She was transferred to MD Anderson in Houston, Tx. to start treatment and begin the battle........

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