Wednesday, August 31, 2011

Day 4- afternoon

While I had my "out", blogging downstairs...Taleah was having a great time. These pictures just show that she is getting used to it. Part of me hates that this is now the way that she plays "pretend", but because we don't have control of what life throws at us... we will take it!

She was ordering her lunch from the cafeteria. "French fries with ketsup, pink milkshake, strawberries and mac-n-cheese!"

She painted grammy's nails...or more like her fingers. They look beautiful.

They decided to play pretend...Taleah was pretending to be Dr. Kerri Smith. She told my mom ," Your heart says bump bump!"

Her new dog Ledgie (from Kaelee) was the patient. She said, "Hold your arm still. It's just giving you a hug (blood pressure). Hold still Ledgie. Ok. Now I will cover your eyes and hold your hand cause you are scared. It's ok!"

Kind of broke my heart but at the same time makes me happy. She might is coming to terms with her new life. Embrace it right!?
Keep it up Taleah. You have lots of support coming your way!

Day 4- A.M.

Last night was rough. She kept waking up every hour crying and saying, "No!". I am pretty sure she was dreaming that we were at PCMC. Except it's not a dream. I felt so bad and I tried to comfort her when she was crying for mommy. But she kept pushing me away and saying, "No, I want my mommy." I wasn't numb then, it felt real. Couldn't quite hold it together. It didn't help that the nurses come in every few hours to take vitals. She wakes up and it's a fight all over again. We were awakened by a tech that walked right in and said,"Good morning!" as we were all cound asleep. That didn't stop her. I guess it was time to get up. Dang. Let's just say that it was not the way Taleah wanted to be awakened.

The new nurses came in and went over some things. Took more vitals, gave more medicine and ate some breakfast. I can already tell the medicine is going to be a challenge. Too bad she has lots to take every day. They gave her more platelets because hers were extremely low. She is now receiving some more chemo, the strong one. Hoping that goes well and if it does we will be discharged. HOME!!! I am hoping that things will go well and she will be much happier.

I have seen so many people and learned a lot in preparation to go home. A new lifestyle coming our way. I hope we can do it. We can! Especially with the support we have.

I don't even know where to begin and how to thank everyone. I'm sure I don't even know every person that has done something for us up to this point. So grateful! Thanks everyone! Truly, from the bottom of my heart. Everytime I think about the help people have been offering I breakdown. Lots of breakdowns. Welcome to my new life! :)

Day 3

Wow.. it has been 3 days. Technically 4 since we had the diagnosis. It seems like it has been so much longer.

Taleah did pretty well on Day 3. She was still whiny when we did the vitals. However, she did watch a few of the times and not say a word. One of the nurses said, "We are just giving your straw a little drink." That went over well and has stuck. Thank you Becky!

She did have another blood transfsion due to her low number of blood cells. Also, her platelets were low but were waiting until the next day to do them. She received lots of treats, animals and presents. She was in heaven as far as that goes. She has had lots of visitors come to see her and she has loved most of them as well. Treena and Kaelee have been extra great. They had some serious dance moves going on and Taleah got a kick out of that.

The moms were right...they said she would "get used to it". I didn't think she would and part of me hates that she has to. But she has and I guess I am grateful for that. It is a little challenging to move around with that dang pole. And I swear we got one that is extra hard. We have seen better ones wheeled around the hospital :)

Basically, we had lots of labs drawn, vitals taken, lots of pee trips, and lots of medicine taken. We were able to go outside for a short while. She loved it but wanted to play in toys that she would not fit through due to the pole. And we were trying to adjust to our new way of life...sanitizing everything! We couldn't quite move fast enough and there were 4 of us working on it. I hear that sanitizing will become easier too!

I think I can tell the steroids are already kicking in. I was told it will slightly change her personality, lots of mood swings, increase in appetite and VERY irritable. Yep, pretty sure that is already here. But it's ok and I will be patient. It's just the steroids!

attempting the indie face

I think I was somewhat numb today...kind of. I didn't cry near as much. I didn't breakdown a whole lot. I was doing what I was taught and going through the motions to make sure I had it down. I only had a few real moments. One of those moments was when a sweet mom stopped by with her 3 year old son who has ALL. She walked in and introduced her son saying, "Mathew, this is Taleah. She has cancer like you." A punch in the gut, but much needed. Taleah has cancer, but so do many other children and they are doing great. It was nice to see this cute boy who had just received his treatment. He was boucing of the walls and ready to play. Another real moment was talking about her losing her hair... and how to go about it. Man...she will still be beautiful. I think it is more so the way people will look at her. They will know she is really sick. Sounds dumb now that I wrote it down... but it's the way I feel. I guess it relates to the way some people have reacted when they see her. They try to hold it together but it is hard. But when people see her and breakdown, it freaks her out. She doesn't quite understand what is happening, but seeing people cry makes it worse. She knows that things obviously aren't right. She will show some people her "Special Button" with a smile and then explain that her "mecinin" goes in her button. She has been such a trooper and I know I keep saying that, but I am amazed at her strength.

Monday, August 29, 2011

Day 2- Afternoon and Evening

The morning wasn't too bad. She didn't feel too great and didn't want to move much, but I could tell a difference. She was mostly a little weak, the port was still sore and the spot where they took the bone marrow sample.

Around 2pm, she started being herself again. Not 100%, but a little spunk was coming out. I loved it! So much!

She didn't have too much to do today and it was kind of nice for her to just use the bathroom, eat and drink (a little), have vitals taken, and take lots of medicine. Nothing too traumatizing and a chance to take it all in.

I had some visits from different "crews" around the hospital. It reminded me how much I still have to learn. It is a little overwhelming and they stack of papers/binder keep staring me in the face. I haven't read much of it and I know I need to. It's almost as if I don't read it then it won't be real. I know it is, but I just don't want to think about it. I will learn what I need to and do my best to care for my baby. Maybe it has all been so fast...

Treena had some serious dance moves. It was VERY entertaining. Taleah loved all of the visitors we had today. Thank you for coming and showing your love and support.

Around 9pm (right after this picture), she became tired and in a little pain. It then reminded me why were here and what the next little while will be like. It was kind of slap in the face after the good hours we had together. I know this is how the next 2-3 years will be.

As for me, the rollercoaster was not as extreme today. Probably due to the happy girl I was able to spend time with. I did break down when the social worker came in to remind me of the rules and kindly "put me in my place". Oh and I did break down when I saw the sweet girl with a mask and no hair in the lobby of our unit. Oh and then there was another in the shower. I feel like I am accepting it though and trying to stay positive. It is is the hardest when the crying comes in front of her and then she becomes upset. Also, when people come to visit and they see her and cry. I know how they feel and I feel the same, but it makes her nervous because she thinks something is terribly wrong...which is her having cancer. Still not right.

We are so overwhelmed by the support we have received. All of these people that want to help and I have NO idea how to thank/repay them. It is extremely humbling. The ward, family and friends..THANK YOU!

Hoping tomorrow will be a good day. We will be getting ready for the next big 4. She will receive some blood transfusions, platelets and more fluid. Go Taleah!

Day 2- morning

She is still pretty exhausted, but I can tell a difference from yesterday. She is more with it and more responsive. She has been requesting mommy or grammy to hold her in the chair. She has something against the bed (and Scott at this point)..I am guessing from the traumatic 1st night has to do with that. It feels good to have to first day out of the way. The 1st dose of chemo was given and the big surgery in the OR is done. She is still really sore and doesn't like to move much. Going potty in the bathroom is a big deal and a lot of work. She is being such a trooper. I wish I could explain this better so she would understand. She is still jumping/terrified when the door to the room opens. Anytime a nurse comes in she asks me to cover her eyes. It just about breaks my heart when give her medicine, take her vitals, or check the bandages...she cries and says," mommy, cover my eyes and hold my hand". I cry just about every time. I keep thinking that I can't handle this, but then I know I have to. I don't have another option.

We have been lucky to have so much family support and help. Treena has been keeping Slade and bringing him to me at the hospital. I have mixed emotions because I feel like I am abandoning him. I know he is taken care of, but I want to be with both. I am glad he is at an age that he doesn't quite understand and is happy to be with anyone that will give him attention.

Being at PCMC is surreal. Especially today now that all of the workers are here. The music, volunteers and people out and about. Still feels like a dream....never thought in a million years that this was something that I would go through...or more so my baby girl. I wish I could take this from her SO bad. She shouldn't have to do this.

The moms that are here with their kids have been so sweet and it is so nice to talk to them. They know and understand. They have been there. What a great group of ladies. I hate that I get to part of their "group" but so grateful that they are here to relate to. Hearing their stories makes me feel...better...or maybe just someone to empathize with. I actually cried my eyes out in the arms of one of the moms... literally 5 seconds after I met her. She was so sweet to just hold me and say that she understood. It's a whole different world...the lingo, procedures, protocol..something we are going to become too familiar with. I keep hearing that it becomes easier which is great to hear. However, at times I feel like it's not fair that this has to become the "drill" for us. That it only gets easier because she has to endure it all so frequently. I don't think it's just get used to it.

It's only been 2 1/2 days. I am still struggling. I have my moments...strong and weak. Happy and sad. I am trying to hold it together. Grateful to have the support. Trying to stay positive. Love my baby girl more than ever. She is so precious and I want her to keep fighting. She is doing great.

Hoping for a good day. People should be coming by today (social workers, financial people, pharmacy, docs, nurses). They are going to make sure that we are able to handle it all once we get home. Day 4 will be a big day, another dose of chemo. If she handles well, we will be coming home on Wed night or Thur morning. We will come back up the following Tue and once a week for the entire month. Day 28 or 29 will be a big day. A day of answers and a telling of what is to come. I am hoping that the prayers will help things go our way. Sounds kind of selfish, but I want this to go as smooth as possible.

Sunday, August 28, 2011

Day 1

We were told that surgery would be at 8am if there were no other emergencies.

It ended up being 10am which wasn't too bad because she slept until then. Riding in the bed to the OR was surreal. I knew I had to let me baby go and be without her for a few hours while her body underwent a lot. The put in her port, did a spinal tap and administed chemo in her CNS, and did the bone marrow biopsy. I lost it again when I had to say goodbye. The doctors were great, but it was still hard to leave. We waited for 2 hours and then she was in the PACU. When she came out of the anesthesia she was upset and wanted her mommy. I ran in as soon as I could and laid by her.

When we went back to our room, she kept telling me she didn't feel good and then she felt the port (on the left side under her rib) and she said," what is that mommy?" I again lost it and while she was crying she told me, "she didn't want the plastic on her tummy." I didn't have the words to tell or try to explain to her. It is something she will have for almost a year....I couldn't pull it together. (I try not to cry in front of her because she gets upset.)

It has been a rough day. She is in a lot of pain and just miserable. I have held her pretty much all day and I actually feel guilty for being in the library right now while typing this blog. BUT I feel like this will be a great way to keep people informed and maybe a way for me to vent (is that bad to say)

I think I am still in shock, still trying to process it all. It doesn't seem fair. I go through the emotions of heartache, sadness, anger, humbled,'s a lot. I don't know how to feel or what to expect. There are some great moms here that have already reached out to me. It's overwhelming to feel the love and support that we have. I just have to say that as a mother this is the last thing that you want to is TORTURE watching your baby girl suffer. I can't even explain how I feel. I am trying so hard to be positive and strong, but I keep having breakdowns whenever I am alone or just watching her when she is in pain. I know I am supposed to learn something from this and I hope I figure it out sooner than later.

Thanks for everyone's prayers. It's amazing to feel the love that we do. Hoping for a better day tomorrow. :) It will get better right?!

The Diagnosis

Thursday night (Aug 25), Taleah woke up gasping for air. She had been waking up more often previous to that night. I ran in and checked on her. I could tell she was struggling to breathe. I was panicked and didn't know what to do. I texted my dad and asked him what he thought. I contemplated the ER, but decided to get her in the warm shower and see if that helped the breathing. And it did. We slept on her floor that night with the humidifier. The next day she seemed pretty good. I just had a feeling that I needed to take her in. My dad offered to call her in some medicine, a nice doc at Sandee's work offered to see her but I had a strong feeling to take her in. Marsden was out of the office so we saw another doc. She told me that Taleah had croup. We were given the steroid to administer for 2 days. I mentioned her history and asked her to pull up her labs. When she reviewed them, and I showed her the skin color/bruising...she suggested labs be drawn again (even though I promised Taleah we were done with that..she had done it 4 times in the past 4 weeks). We headed down and had them drawn, she hated every second. We went home, had naps and I was awakened from a phone call from my dad (he is a radiologist). He said her red blood cells were extremely low and he was going to call Dr. Haslem (oncologist) and see what he thought. When he called back, he informed me that they were going to have the pathologist look over them. I could tell that he was trying not to panic me, but I could tell he was worried. I started getting really nervous. I then received a call from Marsden saying that things weren't looking great and Primary Children's wanted us up there within 5 hours. I lost it. I knew it was serious. Then we talked about ambulance ride or driving up... I voted for the ambulance because I thought it would be wasn't. He then called back to inform me that it was Leukemia.. my heart stopped and I felt like I was in a different world. I had to hurry and pack so we could head out. They dispatched for the ambulance and we would be ready shortly (which ended up 1 1/2 hours later). The ambulance ride was not fabulous and we ended up at PCMC at 10:00 and went to the ER to check her croup issues first. We were down there for about 2 hours (not the best experience due to lack of informed people...who we were told were informed). Then we headed up to our room in ICS.. 4422. Taleah was really pale, tired, traumatized, ect. The oncologist came in shortly to talk about the diagnosis. There were 2 kinds of leukemia and we would find out the following day which one she had. Not that either are great, but 1 (ALL..acute lymphoblastic leukemia...seemed "better" than the other). The treatment is a little easier and can be partially done in STG.

That night was rough. Taleah screamed everytime the door opened, everytime someone walked in the room, everytime someone touched her and even in her sleep probably dreaming about someone poking her. It was heartbreaking and the unknown was almost more than I could handle. We waited and waited the next morning for the news (which was supposed to be 10am). When 12pm rolled around, they came in and my heart dropped. They finally said that they weren't entirely sure but would know in 15 minutes. I just knew that it meant more bad news. I will never forget the moment when the Dr came in and erased the AML from the board and pointed to ALL. I lost it (again) and knew that we could do this.

We then head 45 minutes of teaching and going over treatment which was to start the next day. We even got to go outside for a minute which she loved.That night was full of blood infusions and getting her ready for the next day.

Not sure I slept much...extremely anxious for her big surgery.

Background Info

Taleah is 2 1/2 years old.

Full of spunk and personality. She has always been a healthy baby. People have always mentioned how lucky I was that she was rarely sick.

About 6 weeks ago she had a really high fever (104) on and off for 10 days. We took her in to the peds office and we checked for UTI, kidney infections, strep throat, ect. We finally ended up with some lab work and chest x-ray. The x-ray looked fine but the labs were scary. The doc threw around the word leukemia, but said that it was likely not. What were the chances right?! He took great care of us and kept us up to date and we appreciated that so much. We even had a pathologist look and he said there was no leukemia. I was so relieved. The 3 hour wait until the point was brutal. At least it wasn't cancer, and I could move on with life.

She eventually got over her fever and was pretty much back to her normal self. About 3 weeks went by and she was a little whiny, naughty, and needy...but what 2 year old isn't? I kept thinking it had to be the age. Looking back, I feel like I maybe should have caught on but who knows? My mother in law mentioned her pale skin and some extra bruising. I agreed, but thought it was just lack of sun and a roudy 2 year old. Looking back, I kick myself for not taking her in then. I should probably try not to look need to blame myself.