Cells are Engrafting!!!

We can't believe it, but Max's blood counts are starting to rise already! This kid is so amazing!!! Max is at Day 8 following his transplant and is already showing progress. Typically, counts don't start rising until days10-14.

WBC - White blood cells were 0.1 or less over the past week, yesterday 0.4 and today 1.9. Reference WBC 4.0-12.0.

HGB - Red blood (hemoglobin) was 8.1 yesterday and 8.5 today. Reference HGB 11.5-14.5 with transfusion necessary when below 8.0. We were expecting to transfuse today but the counts came up on their own.

PLT - Platelets were18 yesterday and Max did receive a transfusion. Today he's at 33. Reference PLT 140-440 with transfusion when below 20.

ANC - His ANC, which is a combined white cell count and determines how careful you have to be of infection and germs, etc., was 0 over the past week. Yesterday it rose to 126 and today 1121. Reference ANC count is 1500-5500. He well on his way!

The transfusion nurse explained to me that once Max has been above ANC 500 for three days in a row they consider that the Day of Engraftment. Apparently the WBCs come back first followed by HGB then PLT. He may still need blood transfusions, but his cells are growing already!!

Today he's feeling great too. He woke before 7:00am and was active and playful all morning. Even spent and hour on the floor playing with his toys before heading over to the playroom for an hour of Play-do! When we came back to the room his lunch was here and he actually tried one super small piece of a noodle and had about 6 sips of soda pop. Mind you he hasn't put anything in his mouth since last Wednesday. He still has the sores from his mouth to his stomach, so the nurse gave him an extra dose of morphine before lunch. Seems that it worked well.

The news is great, but Max isn't out of the woods yet. It's still a waiting game to get the counts to stay up and possibly an even longer wait to get him to eat! We'll keep you updated!


News from the Front Line...

Max finally started showing signs of being a transplant patient this past Wednesday. He came down with a fever mostly likely caused by a bacteria already living in his body. This was expected as he has no white blood cells to protect him from anything. He started antibiotics Thursday that will run over the next ten or more days.

His appetite stopped Wednesday night as well and he was hooked up to IV nutrition Thursday. The IV nutrition will run 24 hours per day for as long as needed, maybe up to 3 or 4 weeks. The main reason he is not eating at all, aside from having little appetite caused by the chemo, is because the mouth, throat and stomach sores have started and it is too painful to swallow anything and worse to have it in his stomach. The pain is great enough to warrant Morphine as his pain medication and he is on a constant drip now.

He received a platelet transfusion on Friday, red blood Saturday, and will need platelets again tomorrow, Monday.

Max is very tired and is napping 4 to 5 hours each day. Today he fell asleep at 1:30 and still isn't awake at 7:15. What this means for sleeping tonight is unknown!

He is still in pretty good spirits considering all his pain. Today, Sunday, Hannah came by for a visit. She had been to a girly birthday party and had her toenails painted. Max was so excited for her to show him he actually sat up, got a little too wound up, coughed, hurt his throat, and promptly had to lie back down again. He's very happy to see new faces and makes it a point of letting us know how much he likes his visits with Hannah and Nana & Tata. I'm sure he would really enjoying seeing more people, but it's just not possible. Soon enough!

Good news today was the comment on the bottom of his Complete Blood Count (CBC) sheet: 1 mononuclear cell. This means that something good is happening in his bone marrow and that we should start to see his counts rising in a few days. The stem cells are engrafting! His white count was also up from 0.1 to 0.3 which isn't huge the scheme of things but it is progress!

You wouldn't think it, but time passes pretty fast here. There are constant updates on Max's fever, CBCs, transfusions, helping Max pee or poop, IVs beeping, nurses coming in to make the beeping stop!, nurses taking vitals, etc. Before you know it the day is done and you can't wait to fall asleep on the chair, which is a comfy looking chair that folds out into a slightly tilted bed. It's really a hideous torture devise cleverly disguised in mauve faux leather. Tonight I'm trying a camp cot with my eggcrate on it. We'll see which is worse!


Stem cell transplant procedure update

Andy here. Melissa's still staying with Max 24/7 until tonight (friday) when I take over for the weekend. Last night, Max went on IV nutrition - nothing unexpected as he's beginning to stop eating as a result of sores in his GI tract - which in turn is due to his temporary lack of a functioning immune system. He's also beginning to get some pain medication (morphine) as he may still continue to eat a bit (good) if it doesn't hurt to swallow, chew, etc.

While this is the riskiest portion of the procedure, and which may last for another week to two weeks, Max is doing quite well, relatively speaking.

Melissa will write a more comprehensive update this weekend when she has the time and energy! Thanks to all for the kind thoughts, words, gifts, and offers of help and support. While Melissa and I don't always get to respond to them in as timely or full a fashion as we would like to, know that we DO appreciate everyone's concern and are very grateful to have such wonderful friends and family.


Wow! Max is more amazing with every passing minute. He's still feeling energetic and is eating pretty good. Yesterday his blood count dropped and his isolation started. He has a set time daily to visit the playroom and Hannah came to play with him while he was there.

He woke up this morning 6:15 and wanted to go the playroom right away. Instead we opened up the toy box we brought from home and played on the floor for a few hours. Then we were able to go to the playroom for an hour before they opened to the general public. He ate a nice lunch and then the stemcells were delivered!

Max's stemcells are being infused as I write. Just a little bag of what looks like blood being dripped into him slowly over an hour. He was given some pre-meds (tylenol, bendryl) to counteract the preservative that is mixed with with the cells to keep them from breaking down while they were frozen... so he's having a nice little nap during the whole uneventful procedure.

His blood counts are dropping rapidly now (platelets, red and white) which was the goal, and I expect that Max will start receiving blood transfusions as early as tomorrow. He should also become less energetic until his stemcells engraft (as bone marrow) and start making blood on their own which takes around two weeks.

In the meantime, everything's going way better than imagined!


Transplant update

Andy here. While I haven't been with Max full-time this week, as Melissa has, he is still doing quite well on this last day (Friday) of his high-dose chemotherapy. He's still active, energetic and eating somewhat, which is all very positive and inspiring.

An article in our community newspaper on Max was released today. Here's a link to the article online. For those in the Carmel Valley/Del Mar area, you can also see the article in this week's paper delivered today.



Final Chemo and Transplant have begun!

Max is officially checked in for his big stay: Chemo 7 and the Stemcell Transplant.

Max had an easy day yesterday when we checked-in. Got settled in the room, decorated with all our fish stuff (thank you all), and then had pizza for both lunch and dinner.

This morning he started his final chemotherapy. It will run for four days, then he'll have a three day break before his stemcells are infused. We're not sure what to expect in means of side-effects (nausea, vomiting) during this chemo session... He's on two new drugs (carboplatin and melphalin) plus etoposide. All three are given in much higher doses than he's had before to ensure that Max's bone marrow (which carries the cancer) will be completely wiped out (killed) prior to reintroducing his clean stemcells.

So far today he's feeling great: he ate a big piece of pizza and three fruit cups for lunch; watched a few programs and a movie; and spent two hours in the playroom (the highlight of the day!). His appetite at dinner slowed down a little, and he's getting tired. I'm sure the chemo is starting to wear him down.

By Tuesday his blood counts will drop and he will not be able to leave his room except for about an hour a day to go to the playroom by himself. He has a nice room to be cooped up in... the room is large and has a wall to wall window that looks out on a nice garden and lets in lots of sunshine. I feel fortunate Max was placed in such a great room... some are very small and dark.

Max is such a little trooper and so very cooperative with the doctors and nurses. He doesn't complain about anything. What strength in such a little person.