Day +12-+13

Suzie (the doll) has had many procedures done. When Taleah feels well enough, it is the one thing that she has wanted to do. It is interesting to hear her talk and watch her "help Suzie". It gives me a little insight on how she feels.

 

She has been sleeping in until 11 or 12. She usually takes a small nap around 7 and then we are up until 11:30-12 every night. It seems to be when she feels the best.. after the bath and I feel bad making her sleep when she feels good enough to play. Ha. Totally against my rules!! I will say that I enjoy our little talks, prayers and songs before bed. Her prayers are very sweet and sincere and often times make me want to cry. I am usually up 5-6 time throughout the night, silencing alarms, changing her pull-ups (we have regressed in that area) and calling in the nurses in. Now that she is on oxygen, I am constantly making sure it is right by here so she doesn't drop into the 80's again. The vitals, weigh in and rounds with docs start at about 7am, but she usually sleeps through it all. It is slightly draining but worth it. You would think that I would get bored in the room all day, but somehow it is extremely busy and exhausting.

 

She has been throwing up a lot over the last 2 days and it may have to do with the fact that we eliminated Ativan so I think we will be adding that back in. I just hate the way it makes her act but I think that will be better than throwing up a lot. The oxygen is being used most of the day, we are trying the Lasix twice a day to help with high blood pressure and swelling. The suction has been extremely helpful with the thick mucous in her throat and she has been swallowing the pill much easier . 

Her WBC is still 0.1. We have made no progress on the labs that are drawn every morning. It is staying the same which is better than it getting worse. I was hoping that we would have a faster than normal engraftment, but it looks like we might be lucky to have the average which is day +19. And then there are a bunch of other things to worry and wait for. One thing at a time, right?!

 

I was able to attend church at PCMC today. Let's be sure and mention that it was 30 minutes long and full of good stuff! (my kind of church.. is that bad to say??... oh and I went in my sweats) It was hard to hold it together (surprise). The spirit there was very strong. I wish I could say that I got a feeling that everything is going to be perfect and painless, but I didn't. BUT I did feel a sense of peace and love. I felt God's love for every person there. It is very hard to describe the different emotions I felt but I do know that I felt an overwhelming amount of love.

 

I also attended my nephew's baptism. It was great to be surrounded by family, but I couldn't help but long for my little family to be together again. I wished that Taleah could have been there singing the musical number with her cousins, and wished that Slade could play with his buddy Jett and wished that I didn't have to keep the babies away from the little kids. The night was not about me and my family or what I was wishing for... and there were so many great things that happened there tonight. I am just an emotional rollercoaster and those were all things I felt while there.

 

On the bright side, it is 12:30am and Taleah is happy and acting like herself!! We got to facetime Slade and the two of them were acting like they usually do (saying, "goodnight corndog" and coming up with one million things to say to each other). I was able to spend extra time with the babies and talk to Scott on the phone while I was driving (which is more than I usually can when I am here). Focusing on the positive is all we can do at this point. It is not always the easiest but probably the healthiest thing to do.

Hoping and praying that things will move along quickly and Taleah can get healthy. I am aching for a "normal life" and a happy one for Taleah. She continues to ask about all of the things she can do when she is better. Disneyland is one of them. Not to wish away time, but I am ready for it to be the fall/winter and know that Taleah is 100% donor (Tait). I am getting ahead of myself.

Patience is key. Rely on Miracles.

 

 

Day +8 to +11

Day 8 was a hard one. She had a hard time keeping anything down. We couldn't figure out how to keep her comfortable. I think part of the problem was the fact that she was in a lot of pain and her body was reacting by throwing up. It was so sad. She was crafting with Susan and would stop to throw up and then continue on. She wanted to play so bad but it was a challenge. It's really too bad that she doesn't like to watch movies because she could easily do that in bed without exerting too much energy. She slept almost the entire day because we added in Ativan for the nausea. However, due to the amount of sleep during the day we were up until 1:00am. I didn't want to make her go to bed because she was having such a "good time".

 

Day 9 was a lot better. The energy was much better but she was quite emotional. It is hard for me to discipline the emotion she is showing. It is quite a rollercoaster for her and I feel bad for the people she is taking it out on. I am trying to be patient but I think the lack of sleep is getting the best of me. Cami was also able to stop by for a minute and Taleah loved it. Even though she is not herself, she enjoyed it more than most people understand.

 

Day 10 was a play date with Cami. Taleah was very excited! Every time she woke up in the middle of the night, she continued to ask me how much longer until she could see Cami. I think the fact that Cami understands and has been through it, means a lot to Taleah. I don't fully understand so I think it is very therapeutic for her to have someone to relate to. Even at 5 years old.

 

Taleah has a doll that she is able to do procedures on. She decided that she needed a bone marrow transplant as well and she wanted to wait for Cami to help her.

 Despite the way she felt, she was still able to have a good time and didn't want them to leave. Cami was a great sport because she is 3 years older but is still able to make Taleah feel special. We played some tricks, painted and had some fun.

Cami's (and Chelsea) compassion and kindness means more than she will ever know.

 

 

Slade was sick the week of transplant. I haven't seen him for SO long and I miss him like crazy. As if only seeing him for an hour day was bad enough... now I haven't seen him at all for 12 days. He is being well taken care of and a little spoiled. I have to keep him away for a bit longer. And even though it kills me, it is better to keep him from the twins and Taleah to prevent horrible things from happening.

 

 

Day 11 has been rough. She slept until 12, woke up for a bit and experienced some pain. She slept again from 1:30-3:30. We have put oxygen by her because she is having a hard time keeping her O2 saturation up. I guess this is expected but it is hard to watch her sleep and need assistance to breathe adequately. She is SO swollen and puffy. Her eyelashes have fallen out this time and she just looks so sick. I kept hearing that 11 days out was hard and I can now confirm that is totally is. She has slept most of the day (fit in time to do crafts with Susan) and complained of feeling crappy. One of her lines has a clot and we are working to get rid of that to prevent further complications. Her temp is also reading a little higher than usual, but not a fever.

 

It has been wonderful to have family care for the twins so that I can continue to nurse them. It has also been wonderful for Taleah. She usually lights up when they come in the room. It's beneficial for all of us. I know it is a major sacrifice for our families and we appreciate it SO much. I feel like I can kind of be a mom to these munchkins.

 

These babies love her and she loves them. I am sure some of these tender moments are some that we will cherish forever.

 

 

Her WBC went up to 0.2 on Day 10 and then back down to 0.1 on Day 11. We were hoping that it was a good sign but now I am not sure. I wait for those labs every morning and pray that something is happening. Something good.

 

We will keep moving forward and hope for some miracles. She is working so hard and I am hoping that it will pay off.

Day +5 to +7

I had been feeling "sorry" for myself that I couldn't be with all of my kiddos. Taleah seemed to be getting worse and I figured I would be at this hospital for the next month or so without seeing the rest of my family. Of course I want to be here for Taleah, but I need my other kids too. Constant battle right?!

Treena saved the day by coming to the hospital ALL day on Saturday while I attended a wedding. Taleah actually didn't want me to come back. She cried when I walked in the door. The fact that she was playing with Treena all day and not laying in bed and staring into space made me so happy.

 

And I got to spend time with these 2 babes all day. If only Slade had been in SLC... but I'll take what I can get.

 

Day +6 and +7 were up and down. She has suction available because it is difficult to swallow her own spit. Swallowing the 1 pill morning and night is torture. She usually ends up grabbing her ears (referred pain) and then throwing up thick secretions/blood (TMI ?). She is hooked up to a lot of pumps and meds are CONSTANTLY running. The pain pump has helped to stay on top of the pain but it seems to have its own side effects. Her mood swings are definitely there and at times I have had to get after her for a poor attitude. It is hard because it is way crappy what she is going through, but I have to be careful what I let her get away with. It is fairly difficult to know what is the right thing to do. I basically HATE when she treats other people like crap, but then again she has to feel HORRIBLE! Ugh this mom business is hard. Especially the cancer mom business. Can you tell that this is a struggle for me??

 

Susan (art specialist) has been more than a lifesaver for Taleah. Well, for all of us actually. She was the first person to make Taleah smile since the relapse and continues to make her smile. They plan days to wear matching camo pants, make matching necklaces, and just have a good time together. She will spend over an hour with Taleah and it really lifts her spirits. I don't think she knows what an impact she has had on us throughout this relapse.

Taleah will be happy with me for a bit and then the next second she is angry with me for something. It is really hard to keep her happy and I am not sure if she is just taking out her frustrations on me, but all I want to do is be there for her. I have to make her do the hard things, but I also try and do a lot of things to make her more comfortable and happy while she is here. I start to get frustrated and a little short with her and then I feel bad about it. Again, another balance that I am struggling with. 

 

Taleah's labs look like they are supposed to. She has no immune system and switching off between needing blood and platelet transfusions. I am pretty sure that her entire inside lining is covered with sores. Her lips are also starting to peel and crack. She is retaining some extra fluid so she is receiving a medication to help release some of the fluid. However, she is still pretty puffy and swollen. I keep hearing that it is going to continue to get worse. Talk about anxiety. Only time will tell.

 

We were facetimeing (is that a word?) Slade and Scott tonight and I was reminded of the love I have for the both of them. When Slade started crying and asked me when I was coming home, it was all I could do to keep from breaking down. I want to be home so bad. I wish that this was all a dream and had never happened. I can't imagine how difficult it must be for him to understand why I am never there for him anymore. We are living out of suitcases, in a hospital, at someone else's house and he is being juggled with many different people (that love him). I had to remind him that I would see him in SLC soon and he just kept asking me why. I need to keep reminding myself that we are learning from this. We are growing and something good has got to come of it.

 

I don't want this blog to be only sad and negative. BUT I do want it to be real. This is childhood cancer and we are not the only ones suffering from it. There are so many kids/families and watching them all battle is almost more than I can handle. I can't wait until I am in a place where I can give back, bring awareness and mostly help those that need it.

 

Thank you for all of the support. I am constantly receiving texts, emails and phone calls and it really means a lot.

It makes the battle that much easier.

Thank you!

 

I have learned a lot

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.