Life Update; 3rd Scans Coming Up

Hello! Max is still doing great and has been busy as a bee the last few months. He finished up T-ball before Christmas and just started soccer which he really loves. His hair is growing like crazy and he's due for another trim. We're going for the "fade" which he looks great with especially with his hair coming in a little curly! School is the big highlight everyweek and he can't get enough of it. He's made some great little buddies this year in class (he missed out on that last year...). Max is a very happy little guy!

Max was fitted with hearing aides just before Christmas. His hearing was affected by the last chemo drug he received prior to his stemcell rescue. The hearing loss was expected; it was just unknown how bad it would be. It ended up being quite significant. He spoke very loud all the time and was unable to hear us most of the time. "What did you say, Daddy?" He confused a lot of the letters in the alphabet like P, D T, C, etc. The hearing aides are great and only amplify the tones that he cannot hear. Digital technology! He adjusted to them in one day and noticed the difference right away. He said, "I can hear myself talking now." He's now able to learn the sounds of the letters and his speech (which wasn't bad even before) is improving markedly. His hearing loss is not temporary and he will wear the aides forever.

Max just finished his last round of the retinoic acid! Hooray. We hated that stuff. Poor boy would have chapped lips from his chin all the way to his nose; most of the time cracked and bleeding, too. It caused him to be very moody and emotional, as well as several other side effects.

Max is scheduled for his third round of follow-up scans this month. He just had the bonescan this week and has his MRI and bone marrow aspiration next week. We'll post the results when we have them.

A few monthes ago Andy noted on the kids growth chart (our bathroom door jam) that Max grew about 4.5 inches from 12/2004 - 12/2005. Good thing he didn't lose any weight while he was in the hospital!

A year ago today...

Max checked into Children's Hospital San Diego for diagnosis of what we eventually found out to be his cancer. Today, he has his chest catheter out (last Tuesday), is doing great, cancer-free and back in school. It goes without saying that without the support of our families, friends, business associates - all whom offered their help and support in too many ways to list here - we wouldn't have made it through the past year in as good as shape as we did. So to everyone, thank you!

Great Scans!

Max had his second round of scans this week. MRI, CTscan and bone scan... and all came out clean. I guess we can officially say he's in remission! Wow. His next sest of scans will be in three monthes; beginning of January.

We will make an appointment next week with his surgeon to have his hickman cathiter removed. (His "tubes" as he puts it.) Max is looking forward to this like nothing else. He'll be able to take a deep bath, a shower, go swimming... even get dressed all by himself because daddy and mommy will not have to unpin his tubes from his clothes. No more daily tube flushes, and no more weekly bandage changes.

Max still needs to have blood drawn about twice per month to check his chemistry (he's on retinoic acid orally for the final part of his protocol) but he's been having this done in his arm like a big guy (with a little help from numbing cream)!

Hair growth and recent events

This post is really just an excuse to post some vacation pics that show how well Max's hair is growing in. Otherwise, everything is normal. He's taking his 13-cys Retinoic acid without problem. Being the stud that he is, he's also now had two blood samples taken via needle, which means that he's ready to have his Hickman catheter removed.

Here's a photo of Max at a train museum in Carson City, NV. See the hair?



And here's a photo of (l-r) Anna, Hannah and Max in the meadow on Mt. Rose.



Finally, Max and Hannah at Dland on the way home from Tahoe. All in all, a good week spent with each other!

Scan Results - Great!

Max received his MRI, CTscan, bone marrow biopsy and hearing test as scheduled on July 5.

All the scans and the biopsy show the cancer as dead. We can't say, "it's gone" because there is still a small (bullet size) portion of dead tumor tissue left in his neck that they don't want to try to remove - too invasive - and the scans show that it is dead. The pathology results from his bone marrow biopsy show no cancer cells.

Max will receive these scans and tests every three months for about two years to track the cancer and make sure it doesn't come back. Nueroblastoma is a very aggressive cancer and they don't take any chances with it.

Max showed a little loss in hearing at his hearing test. Mostly in the upper frequency range, but still within normal hearing range. We're going to take him to a hearing aide specialist and see what they can do for him. He has been displaying loss of hearing. Says, "I can't hear you. What did you say?"

He is in his final stages of the treatment protocol and is taking oral medication, Accutane (retinoic acid). 14 days on and 14 days off for 6 months. He still has to give blood for lab tests every two weeks, and currently still has his tubes (Hickman catheter) in his chest. We're going to try putting numbing cream on his arm and have an IV inserted for these blood draws and see how he fairs. We'll obviously explain to him that if he can tolerate the IV blood draw he can have his tubes removed. He's already asked when they're coming out, when he can take a shower or a deep bath, go swimming, play in the waves without having cling wrap all over him, etc.

We, the whole family, are enjoying only visiting the clinic every two weeks... and not being inpatient anymore! It's so nice to be home!

Radiation Complete!

Max is such a stud! He went to radiation for 3-1/2 weeks (17 treatments) and behaved as good as an adult! (Amazing what the promise of a few gummy bears can do to inspire your child!)

He made up his own routine of bringing a new toy each day to set on a shelf in the radiation room to look at, and always had a small toy to hold in his hands. He'd let the therapists get him all set-up, then we'd all leave the room for a few minutes while he received his radiation. We could watch him on a video screen (to make sure everything was okay) but he had no way to see us. The therapists and his radiation oncologist were quite impressed with him. There was never a hassle!

Tuesday, July 5, he's scheduled for an all day event at Children's Hospital. Max is checking in at 6am for: MRI, CTscan, bone marrow biopsy, bone scan, heart sonogram and a hearing test. The first four are to track the cancer and ensure that is dead everywhere. The heart-echo is to make sure the chemo he received didn't have any adverse effects on his heart (he's had two of these already). And the hearing test is to see what kind of hearing loss he may have suffered from the chemo; he's received two hearing tests as well. Hearing loss is a typical side effect of some of the chemo drugs he was given. As far as we can tell from being with him everyday his hearing doesn't seem to be to bad off. He may need a hearing aide for certain circumstances... we'll find out!



Max had a great 4th birthday party last month. He celebrated with three of his best buddies. We took them to the local firehouse to check out a fire engine! The boys had a blast, got to climb inside, put on firefighter equipment,and meet real live firefighters! At the end of the tour the Fire Chief asked them what they wanted to be when they grew up... Max quickly answered, "I'm going to be the trash guy!" I guess when firetrucks get a big claw-like arm that can pick-up big cans and slam them back on the sidewalk...

Max update - not much new

Max is doing well. Extremely well. Short of his lack of hair, and the catheter in his chest, you would never know he was just diagnosed with a life-threatening form of cancer 8 months ago. He's about halfway through radiation. By end of June he'll be finished. Then, another round of scans to confirm that the cancer's all gone. He'll then go on a therapy consisting of high doses of retinoic acid - vitamin A - for 8 weeks. Vitamin A in extremely high doses (much more than is recommended for healthy folks), when administered in conjunction with the stem cell transplant, has greatly bettered the outcomes for kids with this type of cancer.

Soon to come... photos with hair (maybe even close ups of eyebrows!)

Incredible writing

Click on the following link: Series running in S.F. Chronicle written by one of its copy editors recently diagnosed with cancer - great writing.

6/8 -- Radiation treatment update

Max is now undergoing his radiation treatment. This is an everyday application of a low (relatively) amount of radiation extremely focused on his tumor area, which is around the junction of his neck and shoulder, on his left side. The amount of radiation he is receiving is low enough (24 grays?) that he isn't experiencing any side effects, nor is he expected to be at risk for any long term health conditions as a result of this radiation. However, nothing is certain, as we have been taught buy this ordeal.

As usual, the bright spot everyday is Max's attitude and positive personality. He cooperates so well that he is one of the few young children who do not have to anesthesized during the radiation process. Instead, he lays still, as directed, while being set-up and during the 30 second timeframe when radiation is being applied and there is no one else in the room with him, or that he can see. What a stud!

Max's blood counts are doing so well that he's pretty much out of isolation, althought we wouldn't take him on an airplane or into a crowded theater, or anything so enclosed. He will be done with his radiation a day or so before his 4th birthday (6/30), and afterwards may get his Hickman chest cathetar removed. This removal would be great as everyday-beachtime is just around the corner, and his big sister Hannah is taking surf lessons this summer, and Max is sure to want to get out into the water, which he cannot do right now with his catheter still in him.




Max this past weekend; back to the grind in Del Mar...

Radiation Set to Start

Max's appointment with the oncologist/radiologist went pretty much as expected.

Max will get a very low dose of radiation over a very small area (what's left of his tumor) as insurance that the tumor is really dead. The doctor doesn't expect Max to have any adverse side effects like nausea or vomiting or fatigue because the area and dose are so small. The treatments will start on Monday May 30 and will happen daily for about 3 weeks. Each treatment will take about 5-15 minutes total.

Max will have a trial-run this Thursday to introduce him to the room and where he has to lay, etc. Most likely Max will not be able to lay still for the treatments, so he will get anesthesia each day. No one can be in the room with him and there are no windows for him to see anyone through. We'll see how he reacts, but I'm not sure even the DVD player will be much help!



Max wins Pretty-Pretty-Princess! Like those earrings?

Radiation treatment and update

We are going in today (Monday 5/23) to Moores UCSD Cancer Center to have a consult with the pediatric radiologist who will let us know what radiation they think is necessary for Max to have in order to be thorough in his treatment protocol. Even though, as of his last diagnostic update before his stem cell transplant, Max was esssentially cancer-free, this cancer is just too aggressive to leave the door open to any remaining cancer cells.

We were prepared for this of course and we don't anticipate any suprises. Most likely the radiation will be concenctrated at the site of his tumor -- or what's left of it (left shoulder/neck).

This weekend we broke the rules a bit and we went to the beach. Even though Max is still supposed to be in isolation, it was too much to resist... and Max was soooo happy to be out and about, with his feet in the sand. You could just see the joy in his face as he rubbed his toes in the sand!

We'll post another update after his radiation consult later today.

Max Under House Arrest

Max has been home now for almost ten days (24 days post transplant) and he's doing great! You'd never he know in a million years that he had some crazy amounts of chemo and a stem cell transplant if you saw him.

He's officially under "house arrest" as I call it. But, better here than in a small hospital room. His isolation period will last until the end of June, possibly end of July, but he's doing so well that we're banking on the June date. Until then he's not permitted to go outside (although we do let him into the backyard for a little while each day with a mask on), and absolutely no visitors - especially kids, which is breaking his heart because the kid needs to see his friends! The no-outside-rule is due to airborne fungus and molds that he could inhale and become sick from. The no visitor rule is to keep the germs and bacteria he's exposed to to a minimum (again, fine with me, because I certainly don't want Max back in the hospital and I don't want to sleep in that chair again!)

He's doing quite well just hanging in the house and keeping busy with his plethera of toys and DVDs. Every once now and then he gets a little grumpy because he wants to go to the train museum or a park or the beach, but he seems to understand when I remind him that he could be stuck in a hospital room instead of being home. Such a trooper!

Max is taking only one oral medication each day... and he hates it. So you can imagine how fun it is for mommy to force it down his throat each morning. He is only going to the clinic once a week to have his blood counts done and get an IVIG (an immune-antibody something or other infusion).

Max's red blood and platelet counts have stayed up since he engrafted, although last weekend we had to give him two shots to boost his white cell count.

Again, your thoughts, prayers, positive vibes -- whatever you're sending his way -- is working and we thank you!

MAX IS COMING HOME TODAY!!!

3 weeks and 2 days. Almost a world record... He'll be released in about an hour (1:30P). Gotta run...

Miracle Max!

Okay, this kid is just a miracle! We are thirteen days past Max's stem cell transplant, he's been in the hospital for a whole 20 days, his blood counts are out of this world, and as soon as he eats a couple of meals in a row he gets to go home.

Yes, you read correctly: gets to go home. (I hope he eats a great dinner!)

They cut his IV nutrition in half today, to 12 hours per day, which has already helped his appetite come back. Today for lunch he had 1/4 hot dog and 1/2 choc chip cookie. He's on the right track!

Max's blood counts have stayed up and he received his final GCSF shot (white cell booster) Saturday night. He only received two red blood transfusions and two platelet transfusions during this whole stay.

Max is obviously feeling great. Energetic and happy. We remind him daily that he can go home in a few days if he eats well now. He seems to understand and is doing his best.

Weekend update - After dad's stay this weekend.

Max's ANC (see post below for reference) was over 24,000 today. This basically means that a homosexual rhino that just came back from a 'boy's weekend' on Castro Street in San Francisco, and which coughed in Max's face and wiped his nose with Max's hand wouldn't be cause for Max getting sick. More important, his red blood cell count went up, which is the last to rise and which truly signals that he's producing blood on his own and at a fairly good clip. Super Stem Cell Boy is his name for now...

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.

www.sdranchcoastnews.com/cvn%20pages/cvnft2.html

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.

Gearing up for the Big One

Max's final chemo treatment is just around the corner! Chemo #7 is tentatively scheduled to start April 11 (pending his blood counts, as usual).

Max will undergo a very high dose of chemo drugs over the first four days of his stay. This chemo is designed to eliminate all of his existing bone marrow to make sure there are no remaining tumor cells. He will be very sick, exhausted, and will be left with no immune system. His bone marrow will be gone and his body will have no way of creating red blood cells, platelets, or white blood cells (they all come from your marrow).

Three days after the chemo he will receive his stemcell tranplant, which will be kind of like a small blood transfusion, except he will be receiving purged (tumor cells removed) stemcells that were harvested from him in December.
The stemcells will "magically" regrow his bone marrow. I say magically because that's how the doctor explained it to us; "...we don't know how stemcells do what they do, but we know they will regrow the marrow."

Max will be in isolation for a period of up to three weeks or longer (pending his recovery based on his blood counts). He will be in the hospital for up to 6 weeks and will be in an isolation mode for up to 100 days at home (no bday parties, no indoor playareas, no Disneyland type trips) until his body fully recovers. (We made a weekend trip to Disneyland March 12 with Max and Hannah's cousins, Alaina and Patrick, and had a lot of fun! see pics below.)

Andy & I have a Transplant Conference on Thursday with Max's oncologist, the transplant coordination nurse and one of the hem/onc social workers. We'll learn more about the drugs, the infusion, risks, etc.



Max & Daddy on the Rocket Ride!




Hannah & Max visit Toontown.




Milk at Powerhouse Park, Del Mar.

More Good News

After speaking with Max's Oncologist, Dr. Roberts, we have learned more about his MRI, bone marrow and bonescan tests. (Max's cancer, neuroblastoma, is a soft tissue tumor in his upper chest/neck area, bone cancer, and bone marrow cancer.)

#1-his bone marrow showed no tumor cells.
#2-the MRI showed a significant decrease in the tumor size.
#3-Max was injected with radioactive isotopes for his bonescan which adhere to cancer cells. The tumor did not "light-up"... nothing stuck to it. Max's doctor and the surgeon determined that the tumor was dead and they would not attempt to remove it or do a biopsy on it (both because they believe it is dead and surgery would still be invasive and would cause delay of the final chemo/stemcell transplant).

Chemo #6 wrap

Hey folks, although this post is dated on the day that Max left the hospital from his sixth round of chemo, its obviously been written and posted at a much later date (3/29). Max's chemo went exceedingly well and he was home on Thursday (3/10) night as scheduled and hoped-for. Since then, he's been doing well, with the exception of the situation that I'll address in a later blog (he got an infection and had to be checked in to the hospital). That's all for now. Melissa and I will try to be more timely in our posts. Somehow March just got away from us both!

Chemo round #6

Max was able to check in today (Monday 3/7). He was actually excited, as he is every time he gets to check in to the hospital. This time around, Max has a roomie, 6 year old Noah who lives near our neighborhood and who we just read about in our community newspaper, the Carmel Valley News. Max is doing well, as always and should be out Thursday.

Good MRI News

Max had an MRI and a bone marrow aspiration last week. His MRI showed a significant decrease in size of the tumor and his bone marrow shows no malignancies! We're very happy with the news, but we're also waiting to have a consultation with his oncologist to find out what this all means in terms of his treatment (and his long-term prognosis).





Even with cancer, the pure "joi de vivre" remains.

Fishes for Max

Just a reminder that Max still needs decorations for his hospital room! Max is due to go in for his stemcell transplant the end of March for an extended stay, 3 weeks of which will be in isolation (confined to his room, minimal visitors).

I am planning on decorating his hospital room in an under-the-sea theme, but, I need your help! I'd really like homemade (or school-made) decorations, like hanging mobiles, pictures, posters and drawings... as long as its lightweight and can be hung on the walls or from the ceiling (there's no table space to set things on). He will have a window that can be decorated with clings. I also plan to hang a blank blue poster board for him to decorate whenever he feels up to it, so if your kids make really small stuff we can use it for that.

If you have time, I'd love to have a photo of each artist to share with Max as well.

Chemo6 Coming Up

It's been 21 whole days since Max's last chemo and he's due for #6! We were hoping to get him checked in March 1, but the Doctor wants to wait a few days to make sure his blood counts stay up. Max received red blood and platelets last week and his counts were great today, however, because he's further into his treatment his bone marrow has a harder time manufacturing his blood. One of the nurses said, "once the kids get further into treatment their bone marrow just gives up and yells Uncle!" So we have to expect delays!

We hope to check-in on Thursday!

Chemo 5 wrap

Sorry this is a late post. Max's fifth round of chemo ended last Friday (2/11) with good results and a happy Maxi-boy leaving CHSD. We were able to meet with his new doctor, Dr. Roberts, who reviewed Max's case with us and also gave us some additional insight into 'what to expect' going forward. Delays, such as we experienced with this round, are to be expected as the cumulative effects of the chemotherapy drugs have their effect on Max's ability to recover in as timely a manner as possible. This means that most likely Max's seventh round, which includes his stem cell rescue procedure and 6-8 weeks in the hospital, may not take place until April. That said, Dr. Roberts had no problem with our plan to take the family on a short vacation prior to Max being admitted for this extended period.

Max had a great time in his Pirate themed room threatening the nurses and doctors with his sword and telescope and offering everyone "treasure" from a pirate ship tin full of cookies. He met some big-boys who are also bald and came to the conclusion that the whole ward was full of pirates! Shiver me timbers!

Also during Max's 5th chemo session he was able to participate in a drug trial for an anti-nausea med called Palonosetron which has been used on adults for over a year very successfully. The med worked great for Max, too. He was given one dose prior to his first chemo dose on Monday and was nausea-free and in very high spirits until Thursday AM when he got a little sick. (Back to the regular meds!) Max has been nauseous every morning since coming home, which hasn't been fun for him. Today, at his clinic appointment he got sick all over himself, which meant that he came home in a hospital gown as his clothes were covered.

Nevertheless, Max continues to defy any threat of becoming burdened with his cancer and its symptoms, treatment side effects or his shots, and so remains an inspiration to Melissa and I every day.




Max had his heart tested as a result of some of his chemo drugs.

Chemo 5 on!

Max finally was able to be admitted to Children's on Monday. He is doing great. He is participating in a clinical trial for a new type of anti-nausea drug. I'll post the drugs Max is taking for those interested in a later blog post (the list is at the hospital). There is a new photo of Max with all the diodes attached to him on the photo site here

Max got up early today and wanted to find 'the bike', a specially modified tricycle with an attached IV tower for a patients drug bags. Max was watched over by his Aunt Randee for the afternoon and played pirate and generally had a great time.

Melissa brought Hannah to the hospital in the afternoon and Max got to hang with his sister for a couple hours. Since we move both of them into the same bedroom this fall, Max and Hannah have never been closer and so both of them miss each other greatly when they are separated. Still, a small price to pay for the long-term benefits. To anyone reading this with kids relatively close in age, I would recommend trying the shared room concept!

Chemo 5 delayed (again)

Max did not check in on Wednesday (2/2) as we had planned and hoped to do. Same problem - white blood cell (WBC) count too low. So, as punishment for being such a bad boy we decided to give him some shots. Just kidding, of course. It wasn't punishment for being bad, but his doctor did want to try to boost his WBC count and so we have to give him GCSF shots through Sunday night. He obviously doesn't like these shots, but this is what has to be done. During Max's next stay in the hospital I am going to get one or multiple 'faux' shots - get stuck with a needle, basically - so that Max understands that its not just him that has to get shots. Hopefully it will help him handle these shots better emotionally from then on, as its pretty traumatic for him. That's all. Wish us luck in checking in successfully on Monday.

Max on NBC 7/39

Max was on 7/39's Friday morning news show to help promote their station's blood drive taking place this weekend. Thanks to you, Max's supporters we didn't need to promote his blood drive as it was already 90% full by this past Thursday. Here is the clip.

Chemo 5 Delayed

This week we really found out what the doctors meant when they say "you have to be flexible." Up until now, Max has been right on time with all of his cancer protocol. We've been really lucky.

Monday, he was scheduled for admission to the hospital to start his 5th chemo. Blood was drawn and sent to the lab only to find that his white cell count was too low to start chemo! So we tried again on Wednesday. The blood results came back the same. Ugh! (White cells fight infection and drop dramatically following chemo, so they have to be at a certain level before Max can start treatment.)

Max is now scheduled to try again on Feb 2. Wish him luck!

Chemo round #4 wrap-up

Max came home this afternoon. Boy, was he happy to be back! Some new cars for his train set were waiting for him, sent by his Papa (my dad), and consisting of a boxcar and the all-important tanker car.

It's 8:00 p.m. and Max is asleep in his cozy bed. Out of all that he misses being away from home, Melissa and I think its his bed he misses most. The first night he is back from the hospital, you can just see him snuggle into his sheets in such a way that says nothing less than, "its good to be home".

Max is switching doctors. His primary oncologist, Dr. Moody is going back to NY and we'll miss her. But we are getting a good replacement in Dr. Roberts who heads the Hematology/Oncology group at Children's. For the next two weeks, Max will be having twice weekly clinic appointments and a blood transfusion here and there. On that note (blood), Melissa will be posting info soon on the next blood drive. Even though we had a GREAT turnout and therefore results from the last blood drive (thanks to all for accomodating the last-minute venue change and for hanging out in our garage during the rainstorm while waiting your turn), we're still going to have another as this blood not helps to serve Max's needs but other kids as well. Given recent news of the critical shortage at the SD Blood Bank, all who choose to give are encouraged to do so!

Chemo round #4 (revised)

Correction, Max's fourth round starts Tuesday (1/04) and ends Friday (1/07). Max doesn't mind visitors so don't hesitate to ask. The best way to find out the optimal times is to call Melissa's cell phone - 619-990-1234.

Chemo round #4

Max's fourth round of chemo starts tomorrow (1/03). This round, he's back to the drugs he took in rounds one and two, and which he reponded to well with no side effects (unlike round three). He'll be hooked up for 72 hours to IVs and as soon as the 72 hours are up, we can go home.

The past two weeks have been nice to be around him, although he's had a cough the entire time, and seems to be getting worse. We'll see what the docs say on Monday.

Here's a list of Max's medications for this round (in case any one is interested):

Vincristine
Cyclophosphamide
Doxorubicin

Thank you everyone!

Dear Friends and Family,

It's been two months since we first admitted Max to Children's Hospital and found out what was ailing him. We've had friends and family, and friends we didn't know at all, deliver dinners, pick-up Hannah from school, pray for Max, donate blood... the list goes on and on.

We are reminded everyday of all the help we've received - and still receive - and we are so thankful. Thankful to know that we have a network of caring people surrounding us and supporting us. Everyday. Everyday I receive emails asking what we need done. Everyday we get a phone call asking how we need help. Everyday we receive cards telling us that prayers are bring said for Max. Everyday our life is made easier by caring people like you.

Everyday.

And everyday we are thankful for the outpouring of love and support that has encircled our family.

So, thank you. Thank you all. Thank you for thinking of us, thank you for praying for Max and his full recovery. Thank you.

The Mikulak Family

Andy, Melissa, Hannah & Max

Chemo Round #3

Max just finished up his third chemo session. He was in the hospital 12/14 - 12/18. His protocol called for different (chemo) drugs this time around and he was much more nauseated. Had no appetite. Was tired. We spent most of the time in his room.

We did find a cool tricycle with an IV stand built onto it. Max's nurse moved his IV stuff to the "bike stand" and he pedaled all over the hospital on it. His favorite thing to do was to go to the cafeteria and carry the food on the bike back to his room.

Max is getting much more friendly with the nurses and doctors, too. He used to tell everyone who came into his room, "Don't talk to me." Now he puts up with just about everything along as the intruder is not blocking the TV, "You're in the way!" It's quite funny.

Max had a follow-up MRI while he was inpatient. The MRI showed that his tumor has actually shrunk by half! Great news! His doctor told us that if the tumor can be killed by the chemo he may not have to undergo surgery to have it removed. We'll know after the 5th cycle which way it'll go.

The previous week Max went in for his stemcell harvest. They were able to get twice as many stemcells as needed on the first day! The doctor and nurses could hardly believe it. They said that never happens! (How do you harvest stemcells? Well, in a nutshell: Max's blood was pumped out of him and into a machine that spun it around really fast separating all the different pieces based on weight, size, configuration, etc. The stemcells were then removed and his blood pumped back into him. Note: at no time was he bloodless. The process took about four hours, or two movies and ten story books.)

Andy and I were able to sit down with Max's doctor for almost an hour while he was in the hospital. We had a lot of questions and she had a lot of answers.

Most importantly, we learned that when Max receives his 7th chemo treatment (March) the doses will be very high to kill, once and for all, most remaining traces of cancer in his body, including all the good things that are in his blood and all his bone marrow. He'll be on blood products (thank you for your donations!) daily for 1-2-3 weeks depending on his blood counts. Three days after the chemo ends Max will have his stemcells reintroduced and they will (magically) rebuild his marrow, which will rebuild his blood. Max will be in an isolation period in the hospital for 14-21 days - again, pending his blood counts.

At his point Max will remain in a state of "isolation" for 60-100 days at home. No birthday parties, school, movie theaters, stuff like that. Max's doctor explained that following this big chemo and the stemcell introduction, Max's body will basically be like a newborn baby. Any immunities he may have had - including all the immunizations he received and all the dirt we let him suck off his pacifier for three years - are gone. He starts over.

Also following the last chemo and stemcell treatment Max will undergo several radiation treatments pinpointing any place in his body that shows traces of cancer (through bonescans, MRI, CTscans, etc.). The radiation will be like a very direct laser shot at each of these points.

So... I think you're up-to-date! Max and I will be in the hem/onc Clinic tomorrow. (hem/onc = hematology/oncology). As I've said before, Max goes to clinic twice a week to have his blood counts checked. It's been seven days since the start of his last chemo and he's probably going to need a blood transfusion (we've found our first pattern). He's been really tired and cranky today and getting pale, which means his red cells are low. Clinic days can be long, but we've got it pretty wired now. Bring lots of snacks and lots of activities, because even Maxi-boy gets tired of watching TV!

Merry Christmas & Happy New Year, too!
The Mikulak's

Chemo Round #2

Hi all -

Just a big thank you to everyone whose thoughts and prayers helped get Max to his next chemo treatment ON TIME! Max's bloods counts were A-OK today. He checks into the hospital Weds., Nov. 24 for three or four days.

Max's hair started coming out this week already (only 2 weeks since his first chemo treatment). We took it down really short with the clippers and he's pretty relieved not to have it on his hands, in his mouth, in his eyes. Don't be surprised next time you see him! He may not have any left! Irene Jenkins, a mom of one of Andy's childhood friends (Dave), sent Max a bunch of hats last week. His favorite is a blue-camo fleece skull cap. He wore it today and looked totally cute. (Thank you Irene!)

Happy Thanksgiving!
The Mikulak's

Nov 13 Update - Max is out of the Hospital!

Hi Everyone. Since the last big update Max was able to leave the hospital Nov. 8! Hooray! He was very happy and so were we. Hannah was very happy to have everyone back in the house together again. She and Max immediately started fighting over toys. Ahh... back to something normal!

The biopsy on Max's tumor and bone marrow came back positive for Neuroblastoma, so the chemotherapy treatment started right away. (This is a treatable cancer.) His protocol (treatment schedule) is a 21 day cycle: 3 days of chemo, 18 days off, then start again. The 21 day cycle is the ideal schedule, but cannot be followed if Max is sick, has low blood counts, or has any sort of infection. We have to be flexible! During March/April Max will be admitted to the hospital for 45-60 days for a radiation treatment and stem cell replacement. Chemo will pick up again following that and will continue through Dec 2005. Hopefully Max's cancer will then be GONE!

Max responded well to the chemo and had no visible side effects. They are very proactive with anti-nausea meds. They seemed to work! Max ended up staying in the hospital a few days following the chemo because the pain the cancer was causing in his neck, back and legs was so great he literally could not move for over 36 hours. The pain team was working as fast as they could to keep up with the elevating pain, but it just took off. They ended up putting him on a morphine drip and finally got him to a point of comfort where he could roll over in the bed, then move about freely. A few days after the chemo completed his pain started going down (as the chemo stopped the cancer from growing and started shrinking it). Whew. He's now taking tylenol w/codine as needed.

We're finding that being out of the hospital is great - but much busier than we even expected. Every day we flush the tubes on Max's Hickman port (which is the catheter that was installed in his chest). Once per week we have to change the valves on his Hickman and the chest dressing. Mon-Tue-Wed he has to take a special medicine. For ten days following each chemo we (Andy & I) have to give Max an actual injection (shot) in the leg (this is not fun for any of us as you can guess). Twice per week Max visits the Clinic to get his blood counts and sometimes see the doctor. Thursday was our first clinic day. I figured we'd be out of there in 2-3 hours maximum. Wrong. Max's blood counts were really low and he needed a blood transfusion. We were there 8-1/2 hours. We were warned that this can happen! (be flexible) Max got through it just fine. Gee... when our next visit only lasts 5 hours I'm going to be thrilled!

Coming up this month: Max is going to be injected with some kind of radiation on Monday. Tues and Weds he'll have bonescans. Kind of like xrays, but Max's bones will transmit the rays to the machine. Any cancerous spots in his bones will be highlighted.

Next Chemotherapy: Wed-Thu-Fri of Thanksgiving week! Yes, we'll be in the hospital for the holiday (as long as his blood counts and everything else is a-ok). Small price to pay, really.

How are we doing? I know that's the question on everyone's lips. We're doing fine... as fine as any family can be when faced with a life threatening disease. I've told this to a few of my friends, but I'd like to share it with everyone: when you think about something like this happening to your child your mind plays the "what if?" game over and over, and you go through all kinds of scenarios and make yourself crazy. But now that I'm that mom with the child who has cancer, I've found that instead of doing "what if?" I think my mind has made this into almost a business plan. There are a series of things that have to be done in order to get Max cancer free. And that is the goal and the primary focus. There is no time for "what if?" and there's no place for it. It's as simple as that.

Thank you for your love, support and prayers. It's all working.

Nov 2 Update

Thank you all for your outpouring of love and prayers for Max. We have been through a whirlwind of events since I last emailed (oct. 27) so let me get you updated if you're not on my Mom's list! (For those of you I didn't send my prior message to, I apologize and hope you're not too shocked when you read all of this. We're still in shock and really haven't had time to react to these events ourselves.) Know that we all are actually doing well under the circumstances.

Max was finally diagnosed around Friday with a rare childhood cancer called Nueroblastoma. All of the sickness he has displayed since (we think) last April from colds to constipation to fevers, etc. were caused by this cancer. It is very difficult to diagnose sue to the symptoms up until it really displays itself with fever, limping, anemia. Max had a blood transfusion, bone scan, CTscan, MRI, several blood tests, urine test, xrays, and heart ultrasound in the course of three days to determine his illness. It's been crazy.

Max underwent a surgical biopsy, cathider placement and bone marrow biopsy this morning. Everything went exactly the way it should have. (Thank you for your prayers!) Max came out of surgery around 11:00 and was in his room eating cheerios and drinking apple juice by noon. He's very exhausted, but doing great. Little trooper! The biopsy will be read by pathology and his diagnosis will most likely be confirmed as Nueroblastoma sometime tomorrow.

As soon as the diagonsis is confirmed Max will start chemotherpy treatment (like tomorrow). We have a schedule from Max's Oncologist, Dr. Moody, that outlines his chemo treatments and other procedures through December 2005. Dr. Moody has been very frank when it comes to Max's diagnosis and we have every confidence in her and the plan for Max's fight against this cancer. She is familiar with this cancer and has treated it many times before. We were even able to meet a 16 month old boy, Isaac, just down the hall from Max who is going through treatment right now for this cancer. He looks great and is doing well.

We are scheduled to come home hopefully on Friday if everything goes right with his first chemo treatment. (I feel like I'm writing this as a third person. It's all very surreal.)

I'm tired and need a good nights' sleep. Again, thank you for your prayers, your thoughts, your generosity. We can't thank you all individually right now, but know that you are all keeping us strong and will continue to do so as Max fights the big fight through next year. As always, we'll keep you all updated.

Max is in the Hospital...

Hi Everyone -

First, We'd like to thank everyone (who already knows that Max is in the hospital) for your love, prayers and thoughtfulness. We really appreciate everything.

Second, Max is doing okay. Same as before with the low fever, body aches, restless nights, etc. He was diagnosed with pneumonia last week and took an antibiotic, however, his fevers still haven't gone away (day 18 now). So, his pediatrician thought it best to admit him to Children's Hospital so that they can give him constant attention and run test after test after test until they figure out what the problem is.

Currently they have no answers. They have a lot of ideas as to what he could have, so right now they're doing a process of elimination through all the tests. This morning he goes in for a CTscan and hopefully they'll hit something. It could be something like childhood arthritis, an infectious disease... don't know. We just have no idea at this point.

The doctors and nurses there are great, as you might guess, and Max has settled in quite nicely to his bed that goes up and down and couldn't be happier about the TV at his control (great).

Yesterday was a little stressful for all of us. Nothing like checking your baby into a hospital to freak you out! However, we're very happy to be there with all the medical magic and not trying to deal with this at home anymore.

We'll keep everyone updated as we learn more. Thank you for everything!