The Port is Out

Today, Max had his port removed. What a wonderful day. The doctor feels confident enough that Max won't need more transfusions any times soon. It really feels like the end of a very, very long year. Even Max was happy about it. When we walked in to the recovery area, Max's first words to us were "Mommy and Daddy! It's gone!" I have been trying not to make a big deal about the surgery, because I know he doesn't like anesthesia, but I did want to prepare him to have it taken out, because he had grown rather fond of it. I am glad that I did that. Plus, when the head nurse asked him if he knew what they were doing today, he knew the answer.

Everything went as well as it could have, though we did have a rough start this morning. Josh's alarm didn't' go off and I woke with a migraine. We left the house 45 minutes later than my absolute latest to get there on time time. We were supposed to be at pedi hem/onc at 9 for a blood draw and over to the same day surgical unit by 9:45. We didn't arrive at the hospital until 9:40. So, I send Josh and Max up to pedi hem/onc and I went over to surgery to get the paperwork started. It worked out pretty well. Amazingly enough, surgery was actually running ahead of schedule. They were ready for him to get gowned up before he even got there. I only sat for maybe 5 minutes. Last time, it was a good hour. Everyone was very nice as always, and Max was in great spirit, especially because they allowed him to pick a toy from the treasure box at the clinic. He got a big, stuffed superman, which I think was pretty appropriate for today. We had the same prep nurse as we had last year. What a difference it was from last year, though. First of all, the gown jammies that were huge on him last year were way too small for him. He had bright red cheeks and lips, instead of being so pale. We were all in good spirits. The clinic left his port accessed which was wonderful because they were able to administer the original anesthesia through the port instead of using the mask. Max hates the mask. He was very relieved when he was told he didn't need to use it. They inserted an IV under anesthesia.

Max didn't exactly relax before they put him under, instead preferring to look at everything, and we couldn't get him to lie down, so I held him when they put him under, and gently lay him down after he fell asleep. It was peaceful. Then, Josh and I left the room and I went downstairs and got a flu shot (handy, as I was supposed to get one anyway. Max is still considered at high risk, so the whole family needed to get vaccinated again this year. Of course, I had made sure Josh and Lauren were done, but not myself) and grabbed a bite to eat, while Josh stayed upstairs. It was supposed to be a very short surgery, so we didn't want to go too far, and Max likes Daddy when he wakes from surgery, so Josh stayed. I ran into Reverend Ann when I was going to the cafe, and was able to tell her how much her company and counsel had meant to me when Max was hospitalized. It was so nice to see her again. Then, I went back upstairs just in time to see the surgeon, who said the surgery went very well. Then, we waited about an hour as Max slept off the anesthesia. He was due a nap, anyway. He woke up in good humor, though glad to see Dad. Josh held him for a while as he drank some juice and ate some crackers. He was anxious to go home, so as soon as we could, we got him dressed, put him in a carrier on my back to avoid any falling down (the nurses were amazed that I could carry him like that, and in awe of my lovely Buckle Tie.. note in the picture how happy mommy is and how drowsy Max looks. :)), and headed to the car. He chatted the whole way. Honestly, if you hadn't' know it or noticed the bandaid on his hand, you would never have known that he had anything done today.

We bought Max a special movie (Backyardigans Super Secret Superspy) and let him eat a "pie lunch" when we got home, and he is relaxing on the comfy chair. He says he hurts a little bit, but not enough to complain about it. I think I am whining more about my achy shot arm. He is such an amazing boy.

Oh, the icing on the cake? Max's lab numbers. His WBC was down slightly from last time, but still in a comfortable range, and his platelets were higher than they have been since this whole thing started.

We go back in two weeks for a follow-up. We are going to take it easy the next few days, if I can convince Max to do so, at least. Hopefully, he will heal quickly.

Labs:
WBC: 5.3
HCT: 35.8
HGB: 13.1
PLT: 147
ANC: >1900 (they didn't do the math for me, so I don't know the exact number. There were a bunch of Neuts and some monos. :) )

A Day to Give Thanks

What a lovely Thanksgiving we had this year. It is still so hard not to look back on how things were last year. Last year, we almost didn't get to go to my father's house for Thanksgiving because Max was getting regular transfusions and they were unsure that they wanted him going that far. We were able to go because his didn't need a platelet transfusion until the day before Thanksgiving (this was actually the first sign that things were getting better, I think) but his ANC was scarily low. We had a lovely visit, but were unable to do anything else, and I spent the whole weekend worrying about exposing him to illness. This year was exactly the opposite. Ironically, Lauren caught a cold and we didn't end up travelling in order to not expose my father and stepmother to Lauren's cold. I pulled together a quick meal and we spent the day together. It was so relaxed and lovely. Max looks great and loved spending the time with Josh. The weather was warm and foggy, and we all went to the Cranberry Bogs for a walk. For some reason, Max decided he wanted to ride on Josh's back for a while and he and Josh got to take pictures and look at things and talk together. It was colder today but we had another nice outing. It has been a lovely holiday.

Max's Wish

By the nature of Max's diagnosis (a child with a potentially life threatening disease), Max was a Make a Wish candidate. Back in June, Make a Wish volunteers came out and met with him and asked him to make a wish. He wished for a soccer ball for his daddy. That is what happens when you ask a 3 year old questions like that. :) However, after many attempts, they finally asked him if he wanted to go on a trip anywhere. He replied that he was going on a trip. They asked where. He said to the place with the big pool and the beach where he made sandcastles with Uncle Greg. They asked him when. He said "right after you leave. Mommy is going to take me. We have to take an airplane." It was about 7PM at the time. Again, got to love the mind of a 3YO. However, they marked it as a wish and asked what he was referring to. I told them of our trip last year to the Bahamas and they worked on a wish. They suggested the Beaches resort in Turks and Caicos and we thought that sounded like a great place for him (and yes, for us as well). We left on Nov 1st for 5 days and had the time of our lives. Max was in his element and there really couldn't have been a better place for him. He started his day around 5:30 by getting me up and helping me make coffee. Then, he and I would sit on the deck while he read or played with playdough and I would knit and drink my coffee and we waited for the waterfall to turn on and the day to start. It was very peaceful. Then, we would head off for breakfast (fruit, fruit, pancakes, fruit, bacon and sausage, freshly squeezed OJ, and more fruit), and return to our room to get ready for a day of water fun. Max loved the pools and we visited each of them. He also enjoyed the beach and building sandcastles. It was hard to get him to break for lunch or dinner. By the end of the day, both kids (and parents for that matter) were worn out so we usually went to bed early. He was very sad to leave.

Thank you so much Make a Wish. It was a great experience.