I know James updated everyone a few days ago, so I’ll pick up from there. Grandma is in town!!! She can only stay a few days this time around but we are so glad she is here!
Caleb had his MRI on Valentine’s Day morning. This is one of the only procedures at St. Jude where he has to change out of his clothes and into a hospital gown. He is never happy about this, but grandma bribed him with toys and he looked so darn cute in that gown!
We were told if all went well with waking up from anesthesia after his scans, that we would be discharged. Caleb woke up hungry as usual and after a little recovery time was ready to play! So our nurse gave us the good news that we were able to go home.
The one catch however was that one of the antibiotics that Caleb was on in the hospital had to be continued at home and had to be administered through his port. We have never done anything like this before, although we had been warned we might have to do things with his port at home sometimes. We were given a training class on his port regarding how to clean, flush, administer the antibiotic, flush again, and finish with Heperin (an anticoagulant). Touching his port is a very big deal. Once the cap on the end of the tube is open it’s a line straight to his blood stream. If it isn’t kept clean and sterile it could lead to a serious infection. We did one training on fake tubes with fake medicine, and then I did one practice on Caleb’s actual port with the nurse watching and guiding me. I was nervous at first but it was kind of fun to play nurse after watching the nurses do these procedures for months.
Even though we had scans on Valentine’s day, we did not have an appointment to get the results until the next morning. In the world of waiting on scan results this is forever! James and I were trying not to think about it, but anticipation of results always builds are we get closer to finding out. We are so lucky that our doctor understands this. He took a look at the scans before we left and made sure we got the news that all looked good and we would talk about it in more detail at our appointment Friday. We were so grateful to go home with good news! We were able to enjoy the night and not think about it!
The boys were spoiled on Valentine’s day. They received so many goodies from everyone from the nursing staff, to Tyler’s school friends, to friends and family from Florida. I was proud of Tyler because he hand wrote every single Valentine card for his classmates by himself. This is the largest amount of handwriting he has done in one sitting. He was so excited to give and receive Valentine’s in his class, and it meant even more that he wrote them himself.
I was also blown away by Caleb and Tyler’s pre-school in Florida. They sent the most beautiful poster with all the kids handprints and names. I cried! I am going to hang it up in their room. It’s so sweet and they enjoyed looking at it as I read them the names of their teachers and friends.
We also received a box of goodies including “snack robots”. They just got the biggest kick out of those and immediately ate the raisin feet HA HA! Grandma and Grebbie also got them some goodies.
We were blown away by the hard work and thought that went into this beautiful quilt. When I first opened it I just thought “oh that’s sweet, a home made blanket in some of Caleb’s favorite colors…” but as I looked at it closer I got choked up as I read the words… Love, Courage, Hope, Family, Cure… just to name a few. Those words mean so much to our family and I am blown away by the talent it took to make this. The Memphis weather is still very chilly, and it’s the perfect blanket to wrap up in on a cold night!
And perhaps the sweetest moment of the night was the two of them exchanging the Valentine’s cards they made each other. They each had so much pride in the card they colored. I could go on and on but the bottom line is they felt loved by each other and so many, and that is what Valentine’s day is all about!
I had to do 2 antibiotic treatments (called an “eclipse”) overnight, and one this afternoon. I am happy to report that they went very well and I didn’t miss any of the steps. Caleb slept through most of them so that made it easier. I feel more comfortable with the whole process now. This is some of the aftermath of just some of the scrub cleaners, syringes, alcohol wipes, etc.
This morning we had a very early blood draw (7:30am!) and then had an appointment at 10am to go over his blood counts and look at his scans. His counts were good today! His ANC is still low, but he did not require any transfusions today. We go back Sunday afternoon to check counts again. His counts on Sunday will determine a few different things that may happen next week, and of course how soon we start Chemo Cycle 3. But, most importantly our good news from the day… our scans! The doctor said both brain and spine look clean. You could see a slight change from December to now. The contrast in the image of the scar tissue is definitely lighter in the most recent scans, meaning that it is healing. The tumor site itself appears to have shrunk a little more as well. It is amazing the way the brain adapts to things and heals. But after showing the most recent comparisons his doctor said, do you want to look at a side by side of the tumor vs. today? So I said “of course I do!” It’s incredible to see the image of the tumor on August 30th and then see what it looks like months later after removal. I am so grateful and so thankful! Scans are scheduled about every 60 days right now, and the anxiety that builds up to each one is the same. But for now we have reason to celebrate and be thankful!
Caleb thoroughly enjoyed having Grandma at St. Jude today. He played with her in all the playrooms. His favorite activity is to “cook” people food and serve it to them. He just does this for hours and gets the biggest kick out of it. Thanks for playing along today Grandma!
When we got home the boys had another box of goodies to open. They are so loved and so lucky! It was full of all their favorite snacks, a blanket, a home made card, and some other cool things!
We ended our night with a home cooked meal by Grandma. The boys joined in to help too. They love to cook, especially Caleb!
And for dessert, strawberry shortcake with… PLANT CITY STRAWBERRIES!!! How, do you ask? My mom went through the trouble of flying with a half flat of strawberries on the plane!! I am not sure I would go through that hassle for anyone, but she did it for us! I was so surprised. If home had a taste, it would be the shortcake we ate tonight. It was so delicious! The boys loved it too! Caleb especially liked dipping the strawberries in whip cream and eating them!
One last funny story for the evening… I may do a lot of things right but I also get some things wrong. When Caleb’s port is accessed at home he is not allowed to take a bath, but tonight he was begging me for one. They gave us these huge “aqua patches” that will cover his port dressing if he does want to take a bath, but we haven’t used them in a while and I couldn’t find them. James had read that some people just use cling wrap. So I thought, I’ll try cling wrap and medical tape, that should work right?! WRONG! The whole thing ended up so big and annoying that Caleb wanted to nothing to do with it and begged me to just do his normal “wipe down” as we call it, with his special wipes. I felt so bad. Big mom fail!! But I also thought it was funny that he was so upset as he stood there with cling wrap basically covering his whole chest.
Our next appointment is Sunday afternoon, and we will find out what his latest counts are. As I mentioned those counts will determine how soon we start Cycle 3, and they will also determine if we go ahead and do the Lumbar Puncture on Monday. We normally do the LP at the same time he is under anesthesia for scans, but with his ANC so low they didn’t want to do the puncture and put him at risk for infection. If his counts aren’t high enough Sunday we’ll re-check Tuesday and move the procedure to a later date. That’s all for now! We are ready to enjoy our weekend with Grandma!