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)!
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!
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!
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...
Soon to come... photos with hair (maybe even close ups of eyebrows!)
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...
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?
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.
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!
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.
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!
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!
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.
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!
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.
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.
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.
#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).
Even with cancer, the pure "joi de vivre" remains.
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.
We hope to check-in on Thursday!
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.
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!
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!
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!
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):