The Waiting Game

We have been home for over a week now. Cade has been loving every minute. He has been running around the house playing with Rylan. Building blocks. Riding the gator and the Jeep outside. Running through the house playing “hunting” (thanks dad! Haha) Sometimes I get asked to be the deer. I get tired of being the deer after about 30 seconds. I offered to set up their stuffed animals throughout the house one day instead of being the deer, but they weren’t a fan of that idea. Apparently just not as cool as the real moving target thing. We are in the recovery phase right now with Cades treatment. It is just a waiting game. Waiting to see when his blood counts will recover enough to be within the safe parameters allowing him to start the next round of high dose chemo. It’s always refreshing to be home though and see Cade just get to enjoy being a regular three year old again for a while. And I have got to enjoy myself a little too since we’ve been home, which is always much needed. Chris and I got a date night out to celebrate our anniversary early! Even though we were still home by 9, it was a great night out. I got to have a nice visit with my friend Amanda for a little bit Monday morning. Coffee and girl talk. Then Tuesday morning I enjoyed a wonderful massage that my mom got for me ♥️ 

The home health nurse came to check Cades blood Tuesday, Wednesday, and Thursday of last week. His one blood component, the ANC, needed to be greater than 1,000 for three days in a row in order for him to stop receiving the growth stimulating injections that are helping his bone marrow to reproduce. He passed with flying colors with an ANC of almost 6,000 by Thursday morning. Friday we had an appointment back at Children’s for his kidney function test and his dressing change. Thursday night I noticed a couple small zit like spots on his small incision site. The same place and thing that had happened prior to this last cycle starting that we thought was an infected bug bite or something that caused cellulitis. I didn’t know why it was happening again as there were definitely no mosquitoes out with this cold weather we had. I had them take a look at it. They weren’t sure exactly what was going on either, but they wanted to put him back on keflex because whatever it was, it hadn’t cleared up entirely. I was resistant to this because he was already being treated for Cdiff, and the last thing I wanted to do was put him on another antibiotic. We decided to pop one of the spots (poor baby) and culture it to see if it could give us any idea of what was going on. We got a tiny spot that I wasn’t convinced would culture anything given the sample, and the NP sent us home with a script for Keflex in case it got really ugly over the weekend. 

My friend Jamie had just been over a couple days earlier to deliver our care package of the month. She and a group of incredible friends of mine, all of us used to work together at Condell in the NICU, have given us a care package every month Cade has had to fight this. She was bringing our October one to me since we were home and I had the time to visit with her for a while. P.S. You girls are the best, the boys have had so much fun opening the packages each month!! ❤️ Jamie uses essential oils a lot and taught me a little bit about them when she was here and left me with several to use and play with. I immediately text her and asked her what I could do to help, what I thought was infected hair follicles, and she gave me a great concoction to mix in coconut oil and put on it. By the next morning it looked great! I was so excited. And then my toddler went and did what toddlers do best. Hurt himself. He fell off the couch and hit his head directly on the hard wood floor on that very same spot popping the blood blister we had already created from squeezing it to culture it, and due to his low platelets created an even larger nasty blood blister. Thankfully that was all it left. I was worried it was going to leave a giant bruise. The home nurse came again this Monday morning to drawn another CBC to check where his platelets were. Our nurse from CHW called that afternoon, with what I thought would be the results. However, it was to inform me that while she didn’t have the blood results, she did have the culture results and it grew out that he had MRSA at that site. I was so upset!! Seriously?! The 2 most common hospital aqcuired infections and Cade has to end up getting both!? Most of us out in the everyday world probably have both of these bacteria in our bodies, just in a dormant or colonized state, and they never harm us at all. However, because he is immune compromised it is allowing these types of things to take advantage and take over in his body. This was what they said could possibly happen, not speaking to these direct bacteria’s exactly, but just in general. Again, I tried to fight starting the antibiotic Dr Knipstein ordered, hoping he could see it when we went in this Wednesday and decide if it was really necessary. He said that if he were not receiving high dose chemo or immunosuppressed, then we wouldn’t treat it at all. But because he is, he needs to be treated. If the MRSA were to get in to his blood stream it would be very, very bad for him. The thought of this was enough to scare me to my core. I hung up the phone and off to Walgreens I went. Praying that the Cdiff, that seemed to be gone at this point, does not return because of the constant antibiotics. 🤞 🤞 

Wednesday we drove to the hospital for a clinic appointment with the hopes that his platelets would be at least 30 and enable him to be admitted to start round 2. They were only 15. Lower than they had been Monday. I honestly wasn’t holding my breath that they would be high enough to stay, but we had his hearing test anyways, so we had needed to go regardless. He passed the hearing test still with flying colors. Yay! And back home we drove. I looked at it as we got a couple more nights at home in our own beds. Or in my bed I should say. Thursday we took Ry to daycare and Cade and I spent the day together. Cade randomly said to me late that morning as I was putting his coat on to go somewhere, “Boosha is in heaven.” I thought it odd that he would say this out of nowhere. But I just said, yes honey you’re right, she is. As I had mentioned before, Chris’ grandma had passed away on May 31st, the day that Cade began throwing up. Once he was diagnosed and I realized this, I believed in my heart that she left us to become one of his guardian angels and protect Cade through this battle. Well yesterday afternoon, Cade gained another incredible guardian angel. His Boomp. I was laying in bed next to Cade who was napping when Chris called me. I ignored it. After he called me 3 times in a row I asked him if everything was ok and he said no. I left the room to call him back. He answered and told me that his grandfather had just died. I have always dreaded this day. Frank is like a father to Chris. Chris’ father walked out on them when he was a young boy, and Frank was his father figure his entire life. And an incredible one at that as I know that all the things I love about Chris are characteristics that were instilled in him by Frank. He was 92, and while we all knew this day would one day come, it was very sudden and unexpected. None of us were prepared to lose him like this. No one ever is. I can’t even imagine losing my dad right now, or ever for that matter, and it makes my heart ache that much more for my husband. Words can’t even begin to express how much you will be missed Zip. But I’m glad that you are back by the side of your love. Driving each other crazy once again. And I know that you both will now be watching over and protecting our sweet boy. I was instantly grateful that we were not admitted Wednesday because it would have been that much more devastating to have received that phone call in Cades hospital room, unable to do anything. Unable to hug, hold, or comfort my husband. I was thankful I was able to be here with him. 

Today Cade and I drove back to the hospital. I drove with a heavy heart and tears in my eyes that I had to leave Chris on our anniversary and less than 24 hours after the loss of Boomp. They wanted us to come back  today in hopes that his counts had come up over the last couple of days. They weren’t. His platelets are staying steady, but they’re still only 16. His counts overall are a bit down so Dr Knipstein wanted to give him the Neupogen injections again through the weekend and have the home nurse come draw his labs monday morning to see where we sit. Hopeful that it will help boost his body enough to start next week. They said that this just happens. Some kids marrow is just slower to produce than others. The quality and the amount of cells that they get for the stem cell transplant also plays a roll in how fast they come up, and given how challenging it was during the harvest and taking 3 days to just barley get the amount we would need, they’re not really surprised that his marrow is taking it’s sweet time to recover. He had been getting the growth stimulating injections to help his marrow, and now that he’s not received any for over a week this is just his body showing us that this is the natural speed his marrow is able to reproduce. So hopefully giving him a few more injections to stimulate his marrow a little more will be enough to kick start things so we can get on our way to beginning round 2. I’m dragging my feet on giving him the injection tonight. I’m not sure if it’s worse to see it coming or to be woke up out of your sleep by it. I’m trying the later tonight so we’ll see how that goes. It would be wonderful if he just slept right through it. 

Everything happens for a reason. I have always believed that my entire life. While I am still clueless as to why this is all happening to Cade and to us. I do know that we weren’t admitted today so that I could get to be here through the weekend to be here for Chris. And so Cade could get to go trick or treating with Rylan this Sunday. Ironic because it’s the first year that Johnsburg changed from doing it on Halloween day to this Sunday instead and it works out in our benefit. I’m so happy for Cade that he will get to celebrate Halloween at home trick or treating in his neighborhood after all. Though he did wear his Iron Man costume in to clinic today for Ms Suzie. He got his picture taken to add to their wall of Halloween costumes. And he got a hat from the “Love Your Melon” organization that happened to be at the hospital on our way out on Wednesday. Overall, even though I hate this waiting game, it has been good to be home. I just pray that we won’t have to wait to much longer to start the next round. Prayers that his bone marrow will start to wake up and kick in to gear and prayers to my husband and his family as they grieve the loss of one very loved man. ❤️ 🙏🏼 

Little story my mother in law shared with me this morning. She told me that she always prays to St Theresa and the sign of St Theresa answering or hearing your prayers is roses. She send roses to you. She said usually the roses come to her in a picture or on an envelope in the mail. Something of that sort. She went on to say that she had been praying for days and had just been asking/wondering where her sign was. Where were the roses? Was she hearing my prayers? ….she said the prayers were for me and Cade and she shared this story with a smile and a chuckle after turning the corner in to my kitchen this morning to find me snipping the end of some beautiful flowers that Chris had just come home with for me for our anniversary. Roses.