It’s been a while since I’ve posted. I had several weeks to recover…and I’m so thankful for that. My body has actually felt really good and I’ve felt like I could get things done around the house. Most importantly, I was able to get things ready for Hud’s first birthday party. I don’t know how it happened…but he’s now a year old. I know it’s cliche, but it seems like yesterday I was in the hospital delivering him. He is the chunkiest, happiest (most of the time), and sweetest little guy in the world. After I had Harper, I was convinced that I was meant to be a girl mom. Like, for real convinced. When we found out that Hud was a boy, I may have cried a bit. At the time, I knew it was selfish, but I just couldn’t help but feel bummed in my heart. I’m a sucker for bows and ruffles…and I knew it would be frowned upon if I had a little boy in bows and ruffles.
Don’t get me wrong, I was so incredibly thankful to have a healthy baby boy growing inside me…but in my head, I was convinced that it was another girl. Fast forward a year later…and I couldn’t love that little boy more if I tried. He brings us so much happiness and refuses to let us sleep normal hours…but he’s just SO dang cute. He absolutely adores his sister. He wants to do everything she does. He wants to go everywhere she goes. He just stares at her and smiles. He thinks she is hilarious. I love watching their relationship grow. I pray that he always looks up to her the way he does now. And I also pray that she loves him the way she does now.
A little about Hud. He loves being outside. That’s his happy place. He’s walking everywhere. He was a couple months behind Harper when it came to walking…and I’m thankful for that. He’s a mess! He’s into everything…especially the things he’s not allowed to get in to. He hasn’t been a huge fan of baby food…but when we introduced him to table food, his world changed. He LOVES food…most food. If he’s upset, food turns that frown upside down…and then he gets crumbs everywhere. And then he just smiles with a mouth full of food…and my heart could burst.
Now on to the party…we did a lumberjack theme. When I first started telling people that, it seemed weird every time. What in the world does that look like. However, thanks to Pinterest, I was thrilled with how everything turned out.
First, the food. We had egg quiches, cinnamon roll ups, kolaches, donuts on a skewer, and fruit skewers. For the sweets, we had a black bear smash cake (he wasn’t a fan), tree cupcake, fire cupcakes, and s’more cupcakes. The party favors were little bags of honey Teddy Grahams, Chocolate Teddy Grahams, and marshmallows. The tag said, “S’More for later. I’m Plaid you Came.” It gets me every time…I’m plaid you came…
Hudson Thomas, you were the missing piece that made our family complete. You were the answer to every prayer we prayed before you were born. You keep us on our toes. You make us laugh. You have 8 teeth and weigh over 24 pounds…just 8 pounds less than your sister, who is almost 5. You are wearing 2T clothes and they are far from loose…slow down, buddy. We just got the go-ahead from your pediatrician to quit formula (can I get an Amen?!) so now you’re full time milk.
You love exploring. You are so curious about everything…mostly think you’re not allowed to mess with. You love following us around the house and love putting things in your mouth. We can’t take our eyes off you…1, because you’re handsome, and 2, you put anything and everything in your mouth.
Mommy has hated being away from you each week that I’m in the hospital…but I am at peace with everything because I know you are in such great hands and are being loved beyond belief. I won’t be in the hospital forever. We’ve got a little longer to go…the end is in sight. Then I’ll be healthy and ready to love on my baby boy who brings me so much happiness.
I’m sorry your first year wasn’t like most babies. It has broken my heart to be away from you. But being away from you now means that I will get to be with you for years down the road. I can’t wait to watch you grow up. I pray that you stay happy…adventurous…curious (although not too curious)…and full of smiles. I have a feeling you’re going to break lots of hearts…just make sure mine isn’t one of them. 🙂 I love you, sweet boy. We loved getting to celebrate you on Saturday. You loved your party hat…but you weren’t a huge fan of your cake.
In more exciting news…last week we had a Bone Marrow Transplant class. #nerdalert. It was intended for the patient and the caretakers that would be helping during and after the transplant. It was a lot of information, but we were also able to get a lot of questions answered. The Bone Marrow Transplant team at MCD is incredible. They are so thorough, organized, and they just have it together…every last detail. It was a little nerve-racking…but I guess that’s what I expected. There was another couple in the class…they were probably about my age. He was recently diagnosed with Multiple Myeloma. He and his wife are expecting their first baby at the end of June. When I saw her walk in pregnant, my heart just sank. I just kept thinking about the husband…and how I couldn’t imagine the thought of missing the birth of my baby. We talked to them briefly after the class. They are hoping that he will be done with his transplant before the baby comes. If you think about it, please send up a prayer for them. They need it.
Some things we learned about our stay…
-No babies/kids. [Insert broken heart.]
-Every single thing that’s brought into the room has to be able to be wiped down completely.
-Any decorations that are brought up have to be laminated in order to be wiped down. Lovely.
-You have to bring an unopened twin size egg crate and waterproof mattress cover because they beds are so uncomfortable. Awesome.
-There may or may not be a bed for caretakers/visitors to sleep on. Half of the rooms on the floor have beds, half just have a chair. Luck of the draw. I’m hoping and praying for an extra bed…otherwise that’s going to make for a long month for my “caretakers” having to sleep on a chair every night. They said the way the building was constructed, half of the rooms have a large metal pole where the bed is supposed to be. So cross your fingers the Bed Gods are looking out for us the day we get admitted.
-No large groups of visitors. And if you have had even the tiniest cold…don’t come. It’s too dangerous. Something so small could set me back weeks, and as much as I want to see you, I don’t want to be in here any longer than I have to be.
I’m sure there is more, but that’s all I can remember off the top of my head.
The Friday before Hud’s party I called my Bone Marrow doctor’s office to ask what time I needed to be at the hospital on Monday morning for chemo. The case manager called back and said that insurance had not yet approved everything…so that I wasn’t going to be admitted on Monday. My heart sank. Not because it was a huge deal, but mainly because I didn’t see it coming. I had no idea that they were still waiting on insurance approval. The previous times I had gone in for chemo, it had never been a question.
She said that Dr. Matthews wanted me to come in on Monday to check my levels, but that I didn’t need to bring anything with me because I wasn’t going to be admitted. She said she hoped that we would have insurance approval by the end of the week. I guess they were trying to get approval for the whole bone marrow transplant process as well, not just the week of chemo, which is why it was taking longer. Because essentially, when I start this next round of chemo, the process for the bone marrow transplant starts immediately after.
Fortunately, the day she told me I wouldn’t be going in Monday, I was busy getting ready for Hud’s party, so I was relatively distracted. We also had his one year pictures. I haven’t seen them yet but oh.my.word. He did AMAZING. Harper’s one year pictures were a nightmare. The experience was horrible. She did not cooperate. Somehow, our photographer ended up getting some great shots, but the actual experience was a mess.
Hud sat when he was supposed to, smiled when he was supposed to, he was so.stinkin’.cute. I can’t wait to see them.
Fast forward to Monday morning. I went in at 8:30 for my blood work and quick meeting with Dr. Matthews. He came in, said my numbers looked good, and then started talking about the plan. He got out his marker and started writing on the board–he has chicken scratch, remember? The first thing he said was, “I’m going to admit you today.” I almost fell out of my chair…and then I yelled at him. Not in a mean way. But a very surprised, I don’t understand way. (He has a very calm, chill demeanor, so I’m assuming I probably overwhelm him a little…but I’m okay with that. I really, really like him.)
He said that right before I came in, we had gotten approval for this week of chemo. Not the whole process, but just this week. It would have been ideal to have approval for the whole thing right now, but we just don’t. He said that we could wait for approval…but he didn’t want to wait. He wanted to go ahead and move forward with chemo.
The hope and prayer is that we get insurance approval for the rest of the process by this Thursday–which he referred to as Decision Day. If we have approval, we move forward with the original plan. If we don’t have approval by then, we have to tweak the plan a little bit. It will push the transplant process out a week or two, which isn’t favorable…so for now, we’re just hoping for approval by Thursday.
Here are our two current scenarios…
Plan A – We get approval by Thursday. Then when I’m finished with chemo on Friday, before I go home, I will have my tri-fusion line put in. (That’s the pretty thing under my skin and has three lines that dangle outside of my skin. Sounds cute, huh?) It also occurred to me that once this is placed, I won’t be able to hold/pick up Hudson at all until after the transplant process is completed and I’ve done a good amount of healing. Y’all. That could be close to June. The thought that I could go from now until almost June without holding my big ball of Hud absolutely breaks my heart. I know it’s necessary for my health…but for my heart, it’s not good. Because the trifusion line is sticking out of the skin, there is a huge chance of infection…so mix that with a big ball of germs named Hudson, it’s just not a good combination. Not to mention, he likes to pull on things. So, pray for this mama’s heart. That I can make it that long without holding my baby. And pray that he knows just how much I love him, even though I’m not there to tell him myself.
Sorry for the tangent. I got home Friday then Saturday is my “rest day”. On Sunday, I start the 10 days of Neupogen injections. I will drive to Medical City Dallas each day and get an injection and have my blood drawn. Throughout those ten days they will monitor my white count. Once my white count begins to go up, I will then begin the collection process within the next day or so.
The collection process looks like this…I’ll go in super early in the morning and stay for 4-6 hours and will go through what’s called Apheresis. They hook me up to a fancy machine and filter out and collect my stem cells in a bag, while the rest of my blood is put back into my body. Once they think they have enough, I will go home and wait for a phone call. It takes them about two hours once the process is complete, for them to count the stem cells that were collected. They need 5 million stem cells. Not 500, not 500,000…5,000,000. Y’all, that’s a LOT of stem cells.
They said to plan on the process to take several days. Some people can get 5 million collected in a day. Most people, it takes about 3-5 days. So if they don’t get enough the first day, I repeat the process the next day, and so on, until they have 5 million. This also got me thinking…how does one go about counting 5 million stem cells? That seems like quite the project. I’m glad they know what they are doing. They will then store my cells by freezing them…a process called cryopreservation. Since they take out so many cells, they will be able to keep some for the future, in the event that I would need another transplant, I wouldn’t have to go through the collection process again.
A few days after collection, I will be admitted to the hospital for the long stay. I’ll start the super duper chemo–BEAM treatment, that just sounds like an absolute blast. I mentioned the side effects in my previous post. I’ll get that chemo for 6 days straight, then I get two rest days! Whoo! Lucky me! It sounds like at that point I’ll be feeling pretty
lovely awful. After I get two days at the spa of rest, they will go and put my harvested stem cells back in through the trifusion line.
After that day, we take it easy and allow the cells to mature. This process normally takes 2-3 weeks. There is a long list of criteria that I have to meet in order to be released from the hospital. Once I’ve met that criteria, I get to go home…and then come back to the doctor three days a week for several weeks…then two days a week…one day a week, etc. Did I mention how far we live from Medical City Dallas? Ouch.
They also mentioned the importance of having the house deep cleaned about a week before I come home…especially the carpets. So, we will add this to the list of things to do. They said the carpets need to be completely dry by the time that I get home because if they are wet, the chance of mold growing increases…and that’s bad for business after a transplant. So, timing is important for all of this.
Plan B – If insurance doesn’t approve everything by Thursday, then I go home Friday night (without getting the trifusion line placed). Then on Saturday, I’ll go back to the hospital to get a different type of injection called Neulasta. I’ll get that for 3 days (I think) and then wait several days and begin only 5, not 10 days of the Neupogen shots and blood work. Hopefully by this point, insurance has approved everything and I can get my line put in and then we move forward as planned. Like I said, this pushes the process back a week or two…but it’s not the end of the world.
But for now, just cross your fingers that insurance will get a move on it and approve everything by end of day tomorrow.
I got the lumber puncture (chemo to my brain through my spine) yesterday afternoon, so I’m on bed rest, laying flat, until 5 o’clock today. Normally I do this the week after chemo, but Dr. Matthews wanted me to get it out of the way so that we can move forward with the transplant process and not have to worry about bedrest, etc.
I have several prayer requests…
- Work – Because I have been on temporary leave for almost 180 days, I am about to have to resign. Once I hit 180 days, I have two options…I can resign, or they can fire me. Sweet. That was a fun phone call to get. So, I will be resigning soon. We have plans/dreams in the works, but we need a lot of prayers for everything to fall into place. There is quite a bit of anxiety with all of this, so please pray for a peaceful heart. This mama is anxious. (A post about plans for the future will be coming soon…once we get things in line.)
- Finances – We aren’t totally sure how we’re going to make it on Danny’s income for the time being…but we’re going to have to make it work. We are hopeful that He will provide and that we will be blessed financially, just as we have been the past few months. With that being said, I am currently looking for flexible, part-time work that I can do once I’m done with the transplant process. Flexible hours would be great…maybe something that I could do online. I’m a fast typer, very organized, skilled with the computer…so whatcha got for me?! I know there is a lot available, sometimes it just takes knowing the right people to connect you to those opportunities.
- Babies – Pray for Hudson and Harper over these next few weeks. They aren’t going to understand why I’m going to be gone for so long…and that just kills me. We can FaceTime, but it’s just not the same as seeing them in person. I pray that Harper will be strong and will not need her mommy too much during that time. I can only imagine how much they will change over that month. I keep reminding myself that this is what’s best for my health…but the thought of being away from them for a month is almost too much for my heart to bare. I don’t like it…not one bit.
Last but not least, here are some pictures from the past several weeks.
On St. Patrick’s day, I was able to take Harper to Disney on Ice. She was over the moon. It featured Toy Story, Cars, and Frozen…and it was incredible. I couldn’t get over the set display, costumes, etc. She wore a princess dress and had the time of her life. She had such a great time that she wanted to go about half way through…and then she heard the theme song from Frozen and was hooked. We went with Colleen, Nolan, and Kiptin (you’ve heard a lot about them). Their precious grandmother who live in New York, gave each of the kiddos $20 to spend at the show. As you can see Harper is the proud new owner of an Ariel Barbie. Thank you, Grandma Smith, it was such a nice surprise! Your family continues to bless us.
Some a ton of miscellaneous pictures of the babies…
And then just some other miscellaneous pictures…
Quick backstory…4 out of 6 girls on my team are pregnant right now. That’s insane. Here they are. (Not pictured, Lisa…she’s not pregnant. 🙂
A few more #TeamAshley pictures…
And I’ll end with this…