Sunday, December 26, 2010

Tuesday, December 28 - Day +76

I have been meaning to do an update for over a week, but by the time I've gotten Collin to sleep I am drowsy myself, and sleep has won out. We are having a great visit with my parents, and between Collin's appointments and the activity of day-to-day life, we have been keeping busy. So here are the highlights since my last update...

Thursday, December 16
Collin and Neya had been sick on Wednesday, and Collin and I had spent Wednesday afternoon in the clinic. On Thursday, both kids were feeling better, so we felt it pretty likely that they both had the same 24-hour bug. Even though Collin's blood cultures were still negative for an infection in the mediport, we had to return to the clinic for another antibiotic infusion just to be safe. Luckily we weren't there as long as we were the day before, and Collin spent the time watching Elmo and Thomas dvds. When it was time for us to leave, all of the nurses from the clinic came into the room we were in, sang Happy Birthday to Collin, and presented him with a birthday banner and a gift. It was so nice!

Friday, December 17
Collin had a speech therapy appointment in the afternoon. He participated more than he had been so far and had fun earning stickers when he completed a task. It's nice to see him warming up to his speech therapist and interacting more with her.

Saturday, December 18-Collin's 2nd birthday!
We had a little birthday open house for Collin Saturday afternoon. We had family and a few close friends over, and I invited his medical team over for cake because without them Collin wouldn't be here to celebrate any more birthdays. Some of his nurses came by, as well as one of his occupational therapists and his oncologist. It was a very happy day, and a wonderful celebration!

Tuesday, December 21
Collin had an appointment with the ophthalmologist Tuesday afternoon. He was pretty happy with how the corneal abrasion is healing, and has decided to do surgery on Collin's eyes in February. The surgery is called a Bilateral Medial Rectus Recession. The eyeball has muscles attached to it, on the top, bottom, and either side; they move the eye up, down, and side to side. The ophthalmologist will detach the outside muscle from each eye and reattach them farther forward on the eye, so that the muscle will then turn the eyeball farther outward. The surgery will take approximately an hour and a half, and the recovery time will be six weeks. The ophthalmologist will monitor the results of the surgery, and may need to perform another similar procedure farther down the road on the muscles that pull the eye inward.

Thursday, December 24
Poor Neya came down with a nasty cold and a fever of 102, and was very disappointed to miss her Christmas pageant and Christmas Eve Mass. Collin's oncologist said I could take him to mass on Christmas Eve, and he was an angel through the whole service.

Friday, December 25
We had a wonderful, happy day being together with family. I was so thankful that Collin is still here with us, and kept thinking of the many families who were having to spend the day in the hospital with their child, and the families who had to get through this season missing a child whose battle with cancer has been lost. My heart breaks for them, and they are always on my mind and in my prayers.

Monday, December 28
We had the honor of hosting a visit from some of the wonderful members of our THON organization, Altoona THON. We had a great time getting to know each other, and learning more about the fundraising efforts of these selfless Penn State students. We are so excited to attend THON weekend in February; I know it will be an amazing weekend!

Today we are having a relaxing day at home. Neya is still sick, so she has a doctor's appointment later this afternoon. Thankfully so far Collin hasn't caught whatever it is she has, and I hope it stays that way. I've always hated this time of year when kids are always bringing some bug home from school, and it is more stressful now hoping that Collin doesn't get sick. We have had a great visit with my parents, and are sad to see them leave tomorrow!

Wednesday, December 15, 2010

Wednesday, December 15 - Day +63

My parents flew in from Houston today and will be with us for the next two weeks. My plan for today was to get Neya off to school, make vegetable soup in the crock pot, get the room ready for my parents, and finish some laundry, all before taking Collin to his speech therapy appointment at 4 pm. But you know what they say about the best laid plans...

At 2:30 this morning Neya came into our room crying. She said her head hurt and her throat was sore. I took her downstairs to take her temperature, which was 102. I gave her some children's Ibuprofen and got her settled back to bed. But a few minutes later she said she had to throw up, and ran for the bathroom. Sure enough...

At that point Collin was awake and screaming because I had left the room (he is still sleeping next to me in case he needs me during the night; we both sleep better that way). Neya wanted to come sleep in our room as well, but we didn't want her to be near Collin since she was sick, so Bill went to stay with her and I got Collin back to sleep. I took Collin's temperature, and thankfully it was 98.1. I managed to doze back off to sleep.

Around 7:00 am, Neya came in and told me she had diarrhea. Then Collin woke up, so I checked his temperature again, and now it was 100. I rushed around trying to get Collin and myself ready for the day, make sure our bags were packed, and put clean sheets on the bed for my parents. Collin and Neya were downstairs with Bill, and when I got downstairs Bill told me Collin had thrown up. I changed him, took his temperature again (it was now 101) and called the Hem/Onc office at Hershey Medical Center. They told us to come in to the clinic right away for blood cultures to be done to make sure that the new mediport wasn't infected. Then I called our pediatrician's office about Neya, and they said they could see her right away. So Bill took Neya to the pediatrician's office, and after I changed Collin's clothes again (he threw up a second time), I took Collin to the clinic.

Blood cultures were taken through the mediport (Collin did well again, just a little whimper as the port was accessed) and Collin got some IV fluids and an infusion of antibiotics. Since his ANC is 2700, we were allowed to go home (I expected to be admitted to the hospital, so going home was a nice surprise!) We will have to go back to the clinic tomorrow for another antibiotic infusion just to be safe, but it appears that Collin has the same (hopefully 24-hour) virus Neya has. By this evening Neya seemed to be feeling much better, so hopefully Collin won't be far behind. I managed to get home and make vegetable soup in plenty of time, and my parents arrived safely. I'm glad the day has ended better than it began!

Friday, December 10, 2010

Friday, December 10 - Day +58

This week has been a busy one!

Monday Collin had his mediport put in. His stomach had to be empty before anesthesia, so I turned his tube feed off at 4:30 am, and made sure he had his meds and any clear liquids he wanted by 6:30 am. On the days where Collin can't eat in preparation for anesthesia, the rest of us make sure we don't eat in front of him since it wouldn't be fair to him. We checked in at the hospital at 9:30 am, and we were brought into a little room in the Same Day Unit where I changed Collin into a hospital gown and the nurse, anesthesiologist, and surgeon come see us, have us update medical information, sign consent forms, etc. It was the same room we were in a few weeks ago when the Broviac was removed, and Collin recognized it and remembered the little TV right away. He was perfectly happy to watch and play with the TV while we waited. I like to stay with Collin until he is asleep, so I put on scrubs and went with him to the operating room. This time I asked them to skip the Versed (a drug that makes kids drowsy and less anxious before a medical procedure) that was given to Collin before the anesthesia when the Broviac was removed; as long as I stay with him he doesn't get upset, and I was hoping he would come out of the anesthesia quicker and calmer after the procedure than he did when the Broviac was removed. In the OR I put him on the table and stayed with him until the gas put him to sleep. Later after the mediport was put in and Collin was taken to the Post Anesthesia Care Unit, I went to be with him, and he woke up as I got there. He was still a bit agitated for a while, but he did wake up quicker this time. We were moved into another room in the Same Day Unit, and once a chest X-Ray showed the mediport was in the proper place and Collin could drink some juice and keep it down, his IV was removed and we were allowed to go home. Despite being at the hospital for most of the day, everything went smoothly, and Collin didn't seem to be in any pain that evening at home. The mediport is a small round device that is implanted under Collin's skin on the right side of his chest. There is a tube on the back of the device that goes into a vein, just as an IV would, and stays in the vein. Whenever blood has to be drawn or medicine has to be given intravenously, a needle is put through the skin into the mediport to access the vein. It's much better than having to be stuck multiple times to have an IV placed, there are no tubes sticking out of the body that can become infected, and unlike a Broviac, you can take a tub bath or swim with a mediport.

On Tuesday Collin had an 8:00 am speech therapy appointment. The speech therapist is working on building a raport with Collin, and will be working on cognition and speech. Collin didn't want to complete the task the therapist was having him do, so he spent a bit of the session upset, but he eventually finished and proudly carried his stickers with him for the rest of the morning. Following speech therapy, Collin had physical therapy. He is getting better at lowering himself back to the floor after he pulls himself up to stand, and can cruise side to side at a raised surface. He is still walking with assistance, but not independently yet. Tuesday afternoon, we went back to Hershey for an ophthalmology appointment. The sutures from the lateral tarsorraphy had disolved, and Tuesday morning when Collin woke up, his right eye was open all the way. The abrasion is mostly healed, but the ophthalmologist wants to do another lateral tarsorraphy to protect the eye since it still doesn't close all the way. He wants the tarsorraphy to be more permanent, which involves abrading the eyelids so they heal together; then the procedure wouldn't have to be repeated multiple times, and can be reversed when the time is right. At the same time, he would inject Botox into the muscle to relax it and allow the eye to turn outward; then Collin would be able to see better out of the right eye while the left eye is patched. I asked why he doesn't just do the surgery that would permanently turn the eye out, but he had a few reasons why he doesn't feel the time is right yet. Despite his answers to my questions, I don't understand his reasoning, and left his office a bit frustrated.

Wednesday Collin had occupational therapy. He participated well, and was chattering during the session. He was also behaving like a normal two-year-old, throwing some little toys with a big grin in his face instead of doing what the therapist wanted him to do. It was nice to see him exhibit normal toddler behavior! Thursday Collin had speech, physical, and occupational therapy again, so we were on the go all morning.

Today Collin had a clinic appointment. His oncologist is going to set up another hearing test so that if the high dose chemo caused any low frequency hearing loss we can have hearing aids fitted to help with learning speech. She is also going to invite the ophthalmologist to discuss his plans with the rest of the treatment team (oncologists, neurosurgeons, radiologists, etc.) to make sure they are all working toward the same goals. I am going to reduce Collin's tube feeds to one can at night and then try to wean him off completely. At the same time I will start getting him to take his medicine by mouth so that once he doesn't get tube feeds anymore, the feeding tube can be taken out. Collin will have his next MRI mid January. Then Collin had labs drawn today, so his mediport was used for the first time. I had put Lidocaine cream on the area before leaving home this morning, so the area was numb. The counselor from Child Life used small toys and bubbles to distract Collin while the nurse put the needle in and drew the blood for the labs. I was nervous when I saw the needle, but Collin didn't even flinch! I was so relieved! He didn't cry until I tried to get him dressed again, because he didn't want to stop playing. The visit couldn't have gone better!

Everyone seems pleased with how well Collin is doing, and I think he's doing great! I find myself feeling over-the-moon happy, but then I get nervous that things are going too well, because I know that things could change in an instant, and just because he's doing well right now is no guarantee that the cancer won't come back. We need a cure!