Office Visit 5/28

05/28 09:05
ANC 1676

Alan had his second dose of Vincristine today. We had some small rebounds in Alan's counts and weight - Doc A said his ANC levels could improve on their own, and it's nice to know he'll be good for his big brother's birthday this weekend. We've been out almost every night, either to restaurants with playgrounds where Alan can round around free or out front visiting with the neighbours while the kids play. It's wonderful to watch him run, and we want to give him every opportunity.

Alan reached up to the big jar of suckers on the office counter, but once again declined to actually taste his. He had a little chicken noodle soup after his PT session though (he worked hard today doing sit-ups, lunges, bridge and climbing). It was a sad moment when he grabbed a handful of his hair and it came out. It's starting again. I don't know what we'll do this time - wait the week and a half until we're back in the hospital for chemotherapy and have the hospital beautician shave it off again, or just let it fall out naturally. Last summer, I was upset because it was coming out before we could give him his first real haircut and it was coming out all over the white hospital pillow case. We had decided this time to wait until after his surgery at MD Anderson before doing his first real haircut. Last time I was very emotional about the hair littering his bed and I couldn't handle it. We'll see how we do this time.

Office visit 5/26

05/26 12:45
ANC 865

A quick trip to the office for counts. Alan is neutropenic, so we have to start being careful again. I'm just glad we were able to finish out the preschool year before we had to start restricting his contact with other kids. Otherwise, Doc A was happy with how active Alan looked. He sat quietly for the tests again, and was excited every time someone came into the exam room and washed their hands - it's like he was thinking "Can I play with the water too?"

We'll be back Friday for Vincristine and counts. While we were checking out, Alan kept gesturing for me to pick him up. At first I thought he wanted me to hold him, and then I thought he might want to see Sylvia behind the desk. Nope, he was going for the big jar of suckers sitting on the counter. Doc P gave him one last week, which he enjoyed playing with, but he didn't actually deign to lick it. Same thing today - maybe one day he'll actually taste one!

Office Visit 5/24

05/24 12:55
ANC 1520

A quick visit just for counts today after the Vincristine on Friday. Alan's ANC is lower, but still good enough to allow him to attend the last day of his Mom's Day Out program.

Alan was very good through all the poking and prodding today. He is now standing on the floor scale instead of sitting in the baby scale to be weighed and sitting on the chair on his own to have his blood pressure taken. He even sat quietly today while being accessed and having his blood drawn. Even the nurse commented on how good he was since he's normally fights. It makes me a little sad that he's been through this so much that it has become common-place.

Doc A wants to see him on Wednesday, so we'll be back in two days.

Office visit 5/21

05/21 11:16
ANC 3459

Today was the first of two doses of Vincristine before we go back to the hospital for the next chemotherapy treatment. Dad wanted to know if the tumor was shrinking, or at the very least no longer growing. Doc A felt Alan's belly and said it was definitely getting smaller. Doc P was pleased at how well Alan was walking and pointed to that as a good indicator of how he was doing and how well the chemotherapy was working.

With that taken care of, we were cleared for Alan to go out this weekend to his big brother's end-of-year school party at Morgan's Wonderland!

Office Visit 5/17

05/17 12:55
ANC 3152

Alan's counts were good today so he's cleared to attend Mom's Day Out tomorrow. We'll hit the zoo Wednesday morning so he can explore and pet the goats before his immune system gets too depressed.

Doc P prescribed some ointment to help the rash Alan got from his dressing but otherwise it was a quick visit. For once we didn't need to tape up the needle while his blood was being tested. He lay back and played with his PDA until Doc P came back with the results.

Alan's weight has been holding steady so far - his appetite is down but he is eating much more than he did last year at this stage. Hopefully we'll be able to avoid the feeding tube this time around. We'll be back on Friday for Vincristine.

Heading home

05/15/10 0400
ANC 2900

Doc P is happy with Alan's new uric acid levels and with the transfusion yesterday, his blood levels are good too. Just a little Zofran for the road and one more small does of Lasix for his post-transfusion blood pressure. So we're heading home, at least for now. We will be back in three weeks for the next chemotherapy treatment.

As long as his counts don't dip too sharply, Alan should be attend the last few weeks of Mom's Day Out, though the Summer Fun program is definitely out. Doc P has allowed for swim lessons in a private pool when his counts are high enough. It is sad to let go of all the fun plans we had made for Alan - to make up for being so confined last summer. Some are completely out, some are modified. We will spend the next couple weeks before he starts to become neutropenic to give him as much freedom and fun as possible. We'll be taking summer portraits tomorrow morning so we can get them done before his hair starts falling out again. We did the bald pictures last summer and we'll probably have bald Christmas photos for the second year in a row this coming winter. We want to remember him this way before things start getting rough again.

One more night

05/14/10 0430
ANC 3800

Alan fell asleep last night around 5:30 and slept through 5:00 am this morning with a brief awakening around 12:30. He needed the rest - he did not nap the last two days (anesthesia for the CT doesn't count!) and the last two night he's had only 7 or 8 hours of sleep.

He was up bright and early to drink chocolate Pediasure and watch Cars. Doc P was doing rounds today so we saw him bright and early too. The nurse had already told us we'd be staying one more night. The uric acid levels are high (due to the tumor breaking down) and Alan's hemoglobin levels are low, so we'll stay one more day for drugs, transfusion and monitoring.

Hosptial hallway hijinx

With VAC all done this morning and the post hydration complete by 1 pm, Alan was getting antsy being trapped in the hospital crib. We also had a lot of hospital personnel coming by for various kinds of testing - EKG, chest x-ray, and echo cardiogram (on top of the ubiquitous blood tests). Daddy came to the hospital after sending Kevin off to school and held him for a while. Alan was tired but wasn't willing to nap. We ended up taking him for a few walks in the hallway of the HEM/ONC ward.

He happily walked around and around, every so often trying to explore another patient's room. He'd look at us expectantly when we reached a door to the rest of the hospital, but no, we'd have to turn around. There was an interior door between the HEM/ONC and BMT wards, and he was pretty tickled when we opened that one for him. The nurses, who hadn't seem him since his last chemotherapy in October, remarked how big he had grown! One nurse said that she recognized me right away but didn't figure who Alan was. The full head of hair probably helped too.

Alan never got to walk the halls before because he was neutropenic and refused to wear a mask. We fudged the rules a bit today - he was going stir crazy in the room and crib, and since he had just received his first chemotherapy he wasn't immune-compromised yet. If he wants to go for a walk on future hospital stays, he's just going to have to learn to put up with the mask.

As things were, it was quite a workout keeping up with him - one of us next to him and holding his IV line up and the other steering the stand with the IV pump. It was definitely a two person job!


We paused during the walk for vitals. Rather than take him back into his room (and the resultant tantrum) we sat him at one of the nurses' station chairs and bribed him with a cookie.


Alan discovered the foot-operated sinks. Water is fun!

Chemotherapy again

05/13 1000
ANC 4500

Last night was rough. Alan was very upset to be shut up in the hospital crib and just wouldn't calm down. He finally fell asleep around 1 am and stayed asleep through the chemo treatments. The last of it is finishing up right now - Doc A had him on the conventional VAC treatment with Vincristine followup for the next two weeks. Doc P just came in with the whole plan - VAC, VIE (Vincristine, Ifosfamide, and Etoposide), and Irinotecan/Doxorubicin every three weeks for a total of six cycles. And then, unfortunately, we'll be going back to Dr. Lewis at MD Anderson for hip surgery. This was what we were hoping to avoid last fall, but given that the pathology on the tumor that was removed in January was less than 1% viable, what was left in his hip bone is most probably where this new growth arose. This will probably take place in three or four months after we complete the current course of chemotherapy.

Finding out that the tumor was back yesterday was hard enough. Then we got the news that our little friend Collin had passed away. I had managed to keep from crying when we got the news about Alan, but hearing about Collin becoming an angel was just too much to bear. With the help of one of the volunteer grandmothers, I will try to attend the memorial service for him at the hospital chapel this morning.

Deja Vu

We were at the doctor's office this week. We were hoping to write an entry about a scare that ended up being something innocuous but unfortunately we can't. Harold felt a hard mass under Alan's incision - in the shape of a half football with the scar from surgery running down the middle. Doc A sent us in for a CT today and he was on the phone to us before we even made it home from the hospital.

Alan's tumor is back, and we are already back at the hospital. This is an eerie repeat of last April - Alan's irritability, Harold feeling the hard mass, and even dropping Kevin off with our friends Vrad and Krysia while Alan was being admitted to the HEM/ONC ward. We were even at the same computer at the nurses' station viewing the CT results. Alan was completely clear on his last MRI two months ago, and the radiologist that read the results today was amazed by how much it had grown - the tumor now measures 7 x 7.7 x 7.8 cm and he noted extensive destruction of Alan's right iliac wing. From the way the report is written, I'm not sure if it is the original damage or new damage. Alan is walking, running and jumping well though, and just last Friday his PT was saying how much he had improved.

This time though, we are starting chemotherapy tonight. It's big and pressing on his kidneys and pushing up his gut. Doc A wants to start chemo ASAP since waiting until morning could mean the difference between stopping the growth before it blocks something.

Right now Alan is having tantrum in the hospital bed. He is furious to be confined and have his port accessed again. The gas from the anesthesia earlier today is contributing to his irritability too. We've got the lights out now, hoping he'll calm down and get some rest before the chemo arrives.

Office Visit 5/3

05/03 09:40
ANC 3586

Doc P was so happy with how Alan looked today, we don't have to go back for six weeks! We're a little nervous, but we know it's for completely irrational reasons. His weight is ever so slowly creeping up as he starts to add some variety to his diet (he actually ate cheese yesterday!) and he's certainly acting healthy and active. No need for us to take up appointment time just for one of the docs to hold our hands and tell us everything is fine every two weeks!

We have scheduled his next MRI for the end of June, but in the mean time, we'll be throwing with a party to thank everyone who has helped us get to this point!

Relay For Life 2010

Last night was Relay For Life - our second time there as participants. This year the committee decided to choose Alan as the Featured Survivor. We shared how much the Relay For Life and the American Cancer Society had supported us during this past year and why we choose to Relay at the opening ceremonies, and Alan had a great perch on Harold's shoulders for the Survivor's Lap.



Judy has been working with the Friends for Life team on fundraisers and ended up walking the equivalent of a half marathon (52 laps or over 16,500 steps) last night. Thank you to everyone who lent us their support!

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