Last Week Recaps

So last Monday they drew blood on tucker to make sure his ANC was above 500 in order to get chemo, and he didn’t pass his blood counts so we didn’t do chemo on Tuesday. Then on Tuesday at like 5pm I missed a call from Tuckers doc Afify saying that I needed to call first thing in the morning Wednesday to make an appointment to bring Tucker in this week that he needed the chemo (spinal tap chemo) and we needed to go over his MRI. So I called first thing in the morning and we made an appointment for Thursday morning, oh and also they wanted to schedule a bone marrow biopsy. Well that got my heart pounding a little bit- why would they want to check his bone marrow? We already did that in February at it was clean- no cancer…… so why why why now again? Justin and I took Thursday off of work and went up to the oncologist together, it was a very interesting appointment. At one point of the day we had like 4 doctors in the room, it was a little crazy. We got lots of great info, so it was a good thing. Doc Afify confirmed that the MRI showed the AVN damage in both his femur bones, and if it was there then its most likely in other areas of his body, like his shoulder & arms (yes, he has showed symptoms in those places). So the AVN can’t be fixed it’s just damage that will get better over the years, right now the only thing we can do is pain management…. It SUCKS. Also we can’t do steroids again in his treatment- he was due to go through steroids in July, but if we did it would just cause more damage, so that’s a no-go. Doc Afify is researching what we are going to do instead of steroids; she just confirmed the AVN damage last week so she was still scrambling to figure out what to do next. She told me something very interesting, she had gotten in contact with 3 of our nation’s top most respected and experienced childhood Oncologist, she said who are “much older and much wiser” than she is. She was very excited that she has had conferences with these doctors over tucker’s case and they are weighing in on Tucker’s treatment plan. She said they have given her great ideas that she will present to us in June. The most of the ideas are what to do about the ARAC. So they will get us together in a meeting in June sometime to make some “decisions”. But the great news was we know why Tucker is in so much pain, the AVN damage…. Oh that reminds me, they took a bone marrow biopsy also just to make sure his bone marrow is still “clean” with all the pain tucker has had in his legs it was one of two possible problems, either AVN (which they confirmed) or he has relapsed already in his bone marrow (that would cause lots of leg/bone pains)… but they confirmed the AVN so they really don’t think we will have any bone marrow problems, so they are testing it just as a precaution. I’m not to worried about it.

The other doc in the room was Dr Paul, we saw him back in 2007 right when tucker was almost done with his first round of cancer. He’s the child psychologist that is just assigned to the ICS unit and handles only the ICS kids (cancer kids). Back on 07’ he did these big tests on Tucker that were sooo cool, he did tons of tests on him that I can’t even pronounce what they are called, but it’s like the huge IQ tests and well, its hard to explain, but super cool- he wants to test Tucker again and since we have a “baseline” test of him in 07’ now when he retests him we will be able to see if there are any problems with tucker’s brain development with all these cancer treatments and chemos. They also need to get a 2nd baseline of Tucker’s brain before we start radiation on his brain. So I’m looking forward to getting all this testing done, its really very cool and I strongly believe that each kid all over should get these tests done. It shows there strengths and weaknesses- like Tucker’s strength is building stuff, a possible architect builder…. (cool) and his weakness is math. He will never like school and always love recess. LOL

We are scheduled to be admitted for chemo on the 6th for the week, and during that week we will get his “brain” tests done.

Because Tucker was doing so great come Friday he went to school and said goodbye to everybody, it was there last day of school, and Friday night Justin and I packed up Karleen's car and took off to St. George. So. Utah here we come! It was so rainy & icky in No Utah that being in the desert was so nice. We stayed with Justin's brother and sister-in-law, Jeremy & Jealin, with their 2 super ADORABLE kids. We couldn’t do much because Tucker just crashed on their couch the whole time, and he doesn’t do much anyways, but we did get out a little and it was so relaxing. Thank you for letting us come be bums at your home. It was just the break we needed.

We are home now unpacking & relaxing and back in the RAIN-ugh!! I’m so tired of the rain!! Hello, summer? Are you listening?

Love to all, Amber, Justin & Tucker