Transplant

The days leading up to the transplant were quite eventful. Taleah felt great and only wanted to party. I kept thinking that this might possibly not be too bad...

 

We had dance parties, visits from princesses, tricks on nurses, photoshoots and so much more. I think she was actually happy to be there. The only downside was her "diet". She has a very restricted diet and the food has to be prepared a certain way.

 

 

The night before the transplant was extremely nerve wracking. I almost made myself sick. I kept Tait at the hospital with me because I had to check in at 5:45am. I just wanted everything to go right. And then your mind wanders... what if the person taking Tait's marrow gets in a car accident, what if the surgeon messes up, what if there isn't enough  marrow... so many things.

I kept thinking that Tait had no idea what was coming, but I am pretty sure she did. She was so good and handled all of the pre-op stuff well. When the anesthesiologist took her back to the OR, she went happily and I wanted to cry. Such a big moment was about to happen and it needed to go smoothly.

 

The waiting was torture. It seemed like forever.

She recovered pretty well but was pretty sad. She wouldn't smile, nurse and pretty much slept.

 

Tait recovered for about 2 hours and then they let us go back upstairs while they prepared the bone marrow for the transplant. It was pretty amazing that the second we walked into the room, Tait looked right at Taleah and smiled. It was almost like she was saying, "I did it!" They laid in the pack and play together and the moment that I captured on camera was one that I will cherish forever. They looked right at each other, Tait grabbed Taleah's face and they just hugged. It was beyond special.

 

 

Tait slept most of the day. We waited for the estimated time of arrival for that special gold. Taleah requested that her face/head be painted. Susan (Taleah absolutely adores her) saved the day and worked really hard to make it happen and it looked great!!

 

 

 

The crew showed up. We sang a song and celebrated this wonderful miracle. She was a little overwhelmed but tried to soak it all in. 

 

We had preliminary results on the bone marrow. They ended up taking the max amount from Tait which was 150 mls of bone marrow. They want the CD-34 cells to be in a range of 2-5 million to have successful results (it would take a day to get the exact count). They were thinking that Tait would be about 2 million and anything over 1 million would not require the use of the cord. It was a little difficult because of the different blood type and it took a while to remove as many red cells as possible without removing too many white cells that she will need. The BMT team was worried about having too many red cells for the transplant so they decided to divide it into 2 bags and pre-medicate before each. Apparently, that is not the norm so it freaked me out a little. It took about 7 hours to infuse it all through her line and had to be done SO carefully!!

At the end of the first bag, Dr. Pulsipher came in and informed us that the actual CD-34 cells for Tait's marrow was 10.6 million! We were beyond thrilled with that rich marrow. Way to go Tait!

 

Taleah still felt pretty great and even so the next morning. The fam was together for a quick minute and probably will not be for quite some time.

 



 

Now we wait. We endure things that I hear horror stories about. We wait for her body to accept Tait's marrow. It could take 15-40 days... no one knows. We will know when her ANC reaches 500 for 2 consecutive days. She has no immune system and is at risk to catch pretty much anything. I have limited visitors and trying to be extra clean. 

 

Day 0 is the transplant and for Day 1 & 2 she has felt pretty good. Still wanting to play, joke with the nurses and have a great time. I loved every minute of it!!

 

 

Day 3 & 4

 

It is getting harder. She is struggling. She has mouth sores, in her throat and the lining of her insides. It seems extremely painful. She has stopped eating and drinking so she is being fed intravenously. She doesn't even want to play in her rainbow playroom. We have upped the pain meds and trying to stay on top of the nausea. The throwing up was a little out of hand on day 3 so I think we have a system figured out to help that issue. I sat and caught her throw up and watched her struggle to catch a breath and I wanted to cry. It seems like she kind of shuts down when she starts feeling crappy. She won't look at me or really even talk to me. She just stares into space and cries or whines. It makes me wonder why she has to go through this. I wish so bad that I could take it all away. When she is doubled over in pain, I want to hold her and switch places. It is really hard to watch your child suffer (as many people experience in so many other ways).

All while Taleah is struggling, Tait was still sore and needing some extra attention. Also, I sent Slade back to STG and he ended up fevering as well. It more than broke my heart that I could not be there for Taleah, Tait and Slade at the same time. I HATED that I couldn't be a mommy to all of them. I hated that Slade possibly didn't even want me because he has gotten use to the fact that mommy won't be there for him. It sucks pretty bad when you feel like you can't do your job and you feel like your 3 yr old is slowly slipping away from you.

 It's a funny thing as a mom of young children... it's like you can never have a break and alone time sounds like heaven... yet I want them to need me because I need them.

 

I have also met a lot of moms that are pretty amazing. They all have their own story and it really is heart warming and heart wrenching all at the same time. I can't begin to explain the strength I gain from listening to them as well as the anguish I feel for them. This cancer world is something else.

 

I keep hearing that things will get worse before they get better. Makes me physically sick to think about it. However, it is expected and we will do our best to keep her comfortable. We will get through this. She is so tough and such a fighter. Praying for a speedy engraftment and very few bumps along the way.

*Rely on Miracles*

Pre-Transplant

We started the week with meetings. Lots of meetings. So naturally we played Doc Mcstuffins at home. Taleah was a great doctor. 

The broviac surgery went pretty good. It was heartbreaking sending her off. She was terrified and crying. Of course I cried as well. She recovered fairly quickly and had to head home to prep for the cranial radiation the following 3 days. 

 She had a little panic attack before the first treatment. It wasn't on perfectly so it was really tight and it freaked her out. It took some reasoning and she pulled it together and rocked it!

Scott brought the boys up and we decided to have a few days in SLC as a family and do as many fun things as we could without getting too many germs. We went to the Hogle Zoo and the kids loved it.

With the setback, it made it possible for us to attend the Millie Princess race in STG for Taleah. I was so excited that we were going to be there and see the hard work, love and support that was shown to our family. Angel Flight was kind of enough to fly the kids and I home. Scott had a few work things to do and drove the van home. It was much quicker and great to get home for about 2 days. Oh I love STG. 

I can't even put into words the love we felt being at the race. It was amazing. We loved every minute of it!! Taleah thought it was pretty great and I am so glad that she was able to be a part of it. I wish there was a way to thank every single person.

I packed the kids for a good 4 months. It was giving me some major anxiety. I have always been someone who likes short vacations because I miss my bed, I miss the kids being on a schedule and I just miss my house. So…. this is a big adjustment and something that will take some adjusting. 

Taleah had 4 days of total body radiation twice a day. I had heard horrible things and I was very nervous. It was busy, exhausting and she did pretty well. She had one day where she threw up a lot no matter what meds I had given her. It broke my heart (Seems to be happening a lot). Overall, it wasn't horrible (minus the machine breaking and the other one overheating). 

 (Tait doensn't cuddle with anyone… except Taleah)

I must say that I am a nervous wreck. Taleah has been handling things so well and I can't seem to get it together. I am stressed about the transplant, Tait going into surgery, Taleah's body accepting Tait's marrow, the side effects, my twins forgetting me, not being able to put them to sleep, missing their milestones, Slade acting out, missing my other kids. 

It is really starting to take a toll on Slade in so many ways. He needs the interaction with kids and is missing out. I wanted to cuddle with Slade before bed the last night before being admitted to the hospital… and after a few minutes he told me he was done cuddling with me and wanted Grammy. Exaclty what I have been afriad of…. my kids not wanting me anymore and not even needing me. I am glad that they are being cared for and loved so much, but it is my job and I hate that I can't do it. Scott was all alone on his birthday and we won't get to see him a lot for the next few months and that is hard. Cancer is taking so much from Taleah, but also my entire family. I am not trying to get sympathy but I want to be real and document this entire process. The good and the bad. 

We were told to check in on Friday at 8am. She has 2 days of high dose chemo and then Sunday will be her day of rest. Monday morning will be the transplant. Tait will go into the OR around 7am, they will extract bone marrow from her posterior ilac crests and then send to the lab to process because of the blood type difference. It will take appx 4-6 hours to process and get ready for Taleahs body. We are thinking afternoon will be the transplant which will consist of the marrow hanging and then infusing like a bag of blood. The days to follow will be extremely important and exhausting. She probably won't feel well, I will be the germ police and she will be monitored VERY closely. They say that the average person engrafts between day 15-25. I hope it is fast because I keep hearing that the days leading up to engraftment are pretty awful. 

She was acutally pretty excited to come here. I am hoping we get moved to a bigger room. She keeps saying that she just wants to get this over with! I am not sure that she understands what it entails but I don't want to freak her out.

I need to look to her for strength. Mama needs to pull it together! These next few months are going to be long, hard and exhausting but hopefully WORTH IT! 

I just need to remember our motto….

Rely on Miracles

Setback

I wish I could accept that fact that cancer never goes as planned. We came home to have our "break". We planned a few fun things that wouldn't put us around many people. Lunch on the grass, carousel ride (after bleaching the horse),blood transfusion, platelet transfusion, and horse rides at the Wades. She was loving it and we were just happy to be home as a family.

 

She started with the mouth sores again.. so eating wasn't her favorite thing to do. It didn't stop us from having fun though.

 

 (we were waiting for the pink cowboy boots... and Grammy came to the rescue)

 

 

Unfortunately, she came down with a fever on Thur night. We rushed to the hospital and they started a series of tests. Her ANC was 0 and she was close to needing more blood.  

 It ended up that we stayed from Thur night- Mon evening. It was a long weekend and I think we were all a little bitter that we had to spend our "break" in the hospital. Luckily, we enjoyed the nurses and entertainment and made the best of it. We made more music videos, flipagrams and pretty much anything to keep her happy.

She wasn't herself for most of it and it broke my heart. I won't lie and say that I wasn't a little bit sad when I would see pics of everyone else "beginning their summer" and we were stuck in the hospital AGAIN. But that is no way to live!

 

We eventually figured out that she had C-Diff(again), rhinovirus and Cellulitis in her genital/pelvic area. That was the source of the fever. The cellulitis is extremely painful and she was miserable.

We needed to be in SLC on Tuesday for the start of many bone marrow transplant appointments. We were released on Monday evening with just enough time to enjoy some time as a family in the backyard. It felt normal for a minute.

 

We were sent home on a lot of different antibiotics. I had to put them in my calendar with alarms so I wouldn't forget.

 

 

 

We left bright and early to begin the long days of appointments. My phone was ringing off the hook from every doctors office, hospital, home health, ect. It was exhausting.

 

We are so lucky to be staying with some friends that continually bend over backwards for us. Taleah requested roasting marshmallows and of course they delivered. She was in heaven.

 

A combination of the unplanned cranial radiation (due to the leukemia cells found in her CSF), the cellulitis infection and the fever are resulting in the transplant date being moved to June 16. It will all happen on my birthday and I am choosing to believe that it is a good day because it is a start to a new, healthy life.

 

The cranial radiation planning session was heartbreaking. They said she is on the border of whether she needs sedation or not. I knew if I talked with her then she would be able to do it. I was on the verge of tears the entire time. She had tears rolling down her face but she held very still. I was so proud.

 

We also did the total body radiation planning session and she did great with that as well. As we talked about the side effects, I wanted to crawl in hole. It is all a little overwhelming and a lot to take in. However, she did way better than me and rocked it.

 

She also had a bone marrow aspiration and lumbar puncture. The broviac (central line) placement was delayed until the following week. The results from the BMA are KEY to moving forward. I am trying to be positive and believe that they will be great so we can keep going.

 

Her neuropsych test was awesome as well. She spent almost 3 hours testing and talking with Dr. Paul. They were amazed at her social skills and ability to communicate with adults. Sadly, I think she does better with adults than children and I attribute that to cancer. Her reading and math tested to be about the end of kindergarten level (That made me feel a little better).



 

 

We had to fit in a little Treena time as well. She never disappoints. Dinner and a special ball.... the dresses..the dates... the dancing... it was magical.

 

I am so proud of her. I feel like I am lacking energy and a positive attitude and then I watch/listen to her and remind myself that I need to step it up. What a great example of courage and faith.

 

 

 We knew we got to come home for the weekend and we were SO excited. We wanted to do things that made us feel a little normal. Swimming wasn't an option, but she could put her toes in while sitting in the shade. We made compromises and had some fun. We felt kind of "normal".

 

 

The anxiety is creeping up as the transplant date is getting closer. As I signed consent for Tait's portion, I seriously wanted to throw up. It is becoming more real. It is an amazing thing and I am SO grateful that we have a sibling match but I am nervous for my baby. She is so little and she is my baby. We also discovered that they have different blood types and Taleah cannot receive Tait's blood type so it will make the transplant a little more difficult, but doable. They will have the cord blood ready too. It's a lot but we are ready. We are ready to move forward. I keep looking at the pictures that I have of the two girls, and I am reminded of the special bond they have. I know that Tait understands the bigger picture and she willingly signed up for this in Heaven. What a special bond.

 

There is a lot to come. A lot more prep before the actual day. Please pray for my babies.

Rely on miracles.

 

Round 2... Done

We headed back up for the high dose methotrexate portion. We didn't know how long we would be up there. She would have clinic, get an LP and then start a 36 hour infusion of the methotrexate once her urine reached a certain pH level.

She was so sick going up there. Her stomach was hurting and she was really low energy. We found out that she had C-diff and that was the cause of the extreme pain. She started the antibiotics and started feeling a lot better. They had her on very high amounts of fluid in hopes to protect her bladder. We were going pee at least every 2 hours, if not more. And that was around the clock. It was exhausting! We had to wait until the methotrexate cleared her blood and then we were free to go. I was really hoping it was in time for the wedding. We wanted to be there SO bad.

 

 

I must say that cancer is taking a toll on this cute boy. Slade has endured a lot and it has completely turned his life upside down. He is handling it well, but I can definitely tell a difference. I talked with social work and they have suggested a routine. He needs to know what is expected and not be babied because his sister has cancer. Easier said than done, but I agree. He keeps asking me when cancer will be over and repeatedly says how much he dislikes cancer. I completely agree.

Taleah cleared the chemo on Thur morning so we were able to leave Thur afternoon. She had a slight fever on Wed night so I wasn't sure that we would be able to come home. Prayers were answered and off we went. She had counts that were decent and given a thumbs up for the wedding. YAY!! We were all SO excited. She wanted to be a part of it so much!

 It felt amazing to be home. It felt amazing to be a part of the wedding. We also got to a part of my nephews baby blessing and best of all.. be home with my kiddos on Mother's Day. However, the mouth sores started coming and Taleah was miserable. She was also in need of a blood transfusion. She felt pretty crappy and it made for an exhausting/emotional Mother's Day. I was so drained by that night, but we had to get ready for our next inpatient stay which was the next day.

 We flew up and my inlaws brought the rest of the kids up on Tuesday evening. This stay was going to be Mon-Fri with 2 chemos every day and an LP on Friday (with the triple dose chemo). I was nervous and she was miserable because she needed blood again. Once she received that blood, she was a new girl. Color came back into her cheeks and she was ready to dance. I wish I would've started donating blood a long time ago. That blood is saving lives.

We also started getting prepped with info about the bone marrow transplant. That included a few tests. She had an echo, EKG and hearing test. We are doing a bunch of baseline testing to see if/how much damage will be done from the upcoming chemo and radiation. I must say that I started getting a little overwhelmed about the information. Taleah was listening as well and asking a lot of questions. It is going to be hard... so hard. Emotionally and physically exhausting. I am terrified. Anxious to get it done.

 

We received a calendar of testing that will be done next week. IF her counts come up enough to do another bone marrow aspiration then we will be on track to have the transplant on June 10. I am praying that things stay on track so we can get this going and done. But we all know that we have no control and this cancer business is on its own agenda.

 

Another thing that Taleah was sad about missing was her preschool graduation. They were so sweet to include her and let us facetime to be a part of it. We were waiting for a procedure so it worked out perfectly. I won't lie and say I wasn't emotional... I had tears streaming down my face the entire time. It seemed wrong that we were waiting for another LP while her friends were graduating. Taleah held it together just fine and enjoyed it. I had a little pity party and then got over it. She loves that preschool and everyone in it. Again... grateful for amazing people!

 

We were more than thrilled to go home because we knew we would be home for 10 days! Yay. The kids were excited, getting along and anxious to get home. Of course there was a delay on the freeway so it took us 6 hours, but the kids didn't even seem to mind.

 

I keep thinking that I want to make her time at home so great, but she isn't feeling well. She is developing mouth sores again and in need of blood.

 

Honestly, she is anxious and wants it over with. She keeps reminding of that and also doing a pretty good job of explaining what is to come. I haven't had the heart to tell her how much pain she will be in for this next part. And I don't think I will. I am proud of her and the way she is handling things. She never ceases to amaze me.

Me on the other hand... I feel like I am a wreck. I can hold it together most times, but I am tired. I am feeling exhausted on so many levels. It is probably a combination of life but I don't have time to fall apart. I don't have time to be weak. This is all happening and my kids need me, my husband needs me and Taleah needs me.

Cancer is no joke.

 I know that and that is why I am grateful for amazing people in our lives. There have been so many little things that have happened, small acts of service, big acts of service and it makes a giant difference. It gives me hope and "pick me ups" when I need them. I know this is not about me but I feel like I have a big part in it. I am the main person that is supposed to get her through this. I am supposed to be strong, support her and get her to the finish line. I am her mom and it is my job. And I am going to do it the best I can. Balancing life right now is my biggest struggle. I think it's adrenaline at this point, but whatever works and gets us through.

  I know it is hard for Scott because he has to work to provide for us, to keep our insurance and keep his job alive. I know he would want to be her person too, but he is doing what he needs to do right now. Working together to make this work.

 

 

 

I feel like cancer is taking a lot from our lives, but we are also gaining some things too. It's been a crazy ride, we are learning a lot. It's only going to get "crazier", but we will continue to learn. I am praying for a better attitude and the strength to finish full force.

Heavenly Father knows us and what we can handle. I need to remember that.



Results

The dreaded/wanted bone marrow aspiration happened Monday. She had to fast until 2:30 and that was torture. I felt so bad for her. She handled it pretty well. The drive home was long and I am pretty much sick of that drive. The poor girl hates to travel... especially when she isn't feeling well. Breaks my heart.

We started "Round 2", which includes 5 days of steroids and Vincristine (chemo through her PICC). Oh the steroids... I hate them. I think she hates them too. She is older and understands that they make her ornery, hurt and really hungry. It was a long week. I really wanted to enjoy our week at home. I did enjoy it, but that doesn't mean that it wasn't hard. I wanted to be a normal family and enjoy each other's company. That wasn't an option when the steroids started taking effect. I didn't want to depend on anyone, I didn't want to ask for help, I didn't want to feel incapable or mentally/physically exhausted. But I did.

Don't get me wrong, she loved being home. Steroids at home are way better than steroids at the hospital.

She is still loving her new room. She loved having some freedom because she had good counts all week. It was nice to be able to go out with little restrictions and feel "normal".

 

 Waiting until Thursday for the results was torture. I tried not to focus on it, but I couldn't. When my phone rang, I had the biggest knot in my stomach. I was trying to gauge the "results" by the way my doc sounded on the phone. It felt like 10 minutes before he broke the news, but it was probably more like 3 minutes. He let us know that the bone marrow aspiration showed 0% leukemia cells. Nothing... hallelujah! The overwhelming feeling was more than I could handle. They have decided that we will finish round 2 and then prepare for the bone marrow transplant. I guess that means potentially 4 more weeks and then the transplant process begins. We will also do another bone marrow aspiration at the end of this round to make sure she is still in remission. Wow. I am sure the testing for Tait will begin as well. I am hoping she has gained a little weight so that MAYBE we would be able to get enough marrow from her body. So much to think about.

Having my babies under one roof, was a feeling that I hope I never forget. Even though it's been extremely difficult because I feel like I can't do it all, there were still some sweet moments that I hope to remember forever. I know the next 5 months..ish will not be this way so I hope to keep those moments dear to my heart. The next little while is going to be a giant struggle and challenge. I hope I can do it... I hope we can do it. We have the greatest support system ever. Seriously. Family, friends, neighbors and strangers that have already done so much for us. It is very humbling and reminds me that there is so much good in this world.

We are headed up tomorrow for a 3-5 day stay in the hospital (if things go well). It will start out with clinic and an LP (that she has to fast until 2pm for). I am hoping and praying that they do because my brother is getting married and we would love to be a part of it all. We should have the weekend off and then head back up to be checked in for another 5 day stay with an LP at the end.

 

 

 

Taleah hasn't been feeling well coming off of the steroids. She usually doesn't. But this time she has said that her belly hurts a lot and that she needs to throw up. Well, today she did throw up. She hasn't wanted to sit up at all and has no energy. Her counts don't show that she needs blood yet so I am attributing it to the steroids. Watching her suffer and be in pain is so difficult. I know there is worse to come, but I just really hate cancer. Hate is such a strong word, but I really do HATE cancer. I don't like what it does to these kids, I don't like what it does to families, actually I don't like anything about it. Yes, some really great things have happened because of our "cancer journey" but it is hard to remember those sometimes. Tonight I just want to be mad and sad for little Taleah. It seems so unfair that she can't be a normal kid and have a carefree life. Instead, she is stressed about the bone marrow transplant and what is to come (yet, she really has no idea). It's going to be fine. She is tough. We will get through. Today.. I am just a little mad.



Millie's Princess Foundation Run

It all started with Miss Millie. We just wanted her family to focus on their fight with childhood cancer… not the financial fall-out from medical and peripheral expenses.
Therefore our sole purpose is to raise millions of dollars to help families who have children just like Millie… royal children who need to know that the fairytale is still alive.  Millie battled leukemia for half of her life and during that time she made every effort to make sure those around her knew that she loved them. At 7 yrs old sweet Millie took her last breath and we promised that we would always look to her as our example of service, and bringing hope to her cancer fighting friends. In Millie's honor we present to you the First St. George Millie's Princess Run. You can read more about Millie and the foundation here

Millie's Princess Foundation would like to introduce the star of this years St. George run, Princess Taleah Stevenson.

Taleah was diagnosed with ALL Leukemia at the age of 2.  She underwent chemo, and many other treatments at Primary Children's Hospital in Salt Lake City. After two years of treatment she celebrated and looked forward to the life of being cancer free. Being only four years old she was excited to become a little girl again and do all the things little girls do that she had been missing out on. After only five short months of her body being free of chemo she was told the cancer was back. Telling a five year old they had cancer usually wouldn't crush them because they have no idea what cancer is and no idea what is coming. Taleah knows!!! She been there done that. Now, not only does she have to do all the chemo again, but this time around it's a lot more aggressive. She will not be spending much time at home. She is confined to the small little hospital room at Primary Children's for 28 days at a time with small week or so breaks in between. She also has to undergo radiation and have a bone marrow transplant. Both of which are very hard on her little body. Knowing all this, she was devastated when driving in the car to Salt Lake her parents broke the news to her. A little girl shouldn't have to have cancer once, let alone twice. She was silent the rest of the 5 hour drive.

Taleah has finished her first round of chemo and is gearing up for the next step in her treatment. She has had good days and bad days. She is still one amazing little princess and she will beat this cancer again. She is a fighter with one spunky little personality.

 Taleah's family is right there with her fighting.  This may be Taleah's physical battle but cancer affects everyone around Taleah.  Her family is absolutely amazing!  Taleah has a little brother who is 3 yrs old and full of energy.  She also has 5 month old twin brother and sister (little sister is Taleah's bone marrow match).  So you can imagine what a strain this has put on their little family.  Once Taleah has her bone marrow transplant she will recover in the hospital for a bit, but then they will release her with the instructions that she is not to leave Salt Lake for 100 days.  And the quality of housing she has to find has to be up to par with a bone marrow patient. (super clean)  Again, another situation that will take lots of adjustment.  If you know of anywhere for this family to stay let me know.  You can read more about Taleah on her blog Together for Taleah

We want the Stevenson's, like Millie's family, to focus on their fight with childhood cancer… not the
financial fall-out from medical and peripheral expenses.  In doing this Millie's Princess Foundation will be hosting their first St. George run at Desert Hills High School on June 7th starting at 8:00 am.  You can register here.

Dress up in your princess/prince attire and come show your support by running/walking in a 5K event.  There will be activities for the whole family, food, prizes, and lots of fun.  There are also shorter distances for the kids races which will be held after the 5K.

If you can not come, spread the word!  If you still want to help you can donate to the family by linking to their blog and clicking on the donation button.  You can like the facebook page, and share the event on your facebook page.  So there are lots of ways to help if you are not local or can not make it to the run. There is an offer from now until Friday, May 2 at midnight for $5 off your registration if you will share the info about the run with all your friends.  Just enter "share" at checkout.  So jump in and help anyway you can.  Taleah needs your help, but most of all keep her and her family  in your prayers!!!