Chemo - Round 6

We turned Max's hospital room into party central today! Who knew chemo day could be so fun.  Max and Molly officially turned 2 and we had deliveries of fun gifts, food, balloons, friends and family all day.  Molly and Maddie even made it up for a visit to share a birthday lunch together. The oncology infusion staff had a big bag full of presents waiting for him this morning to celebrate his birthday. Even though we had a full day of apointments, chemo, and lots of fun  - he was still able to slip a little nap in. 

We got the next few week's worth of oncology appointments scheduled today, including his next CT scan, his 6 month neuropsych test, and his next IVIG treatment.   He will continue to get infusions of this blood product to wash his blood and get rid of the nasty antibodies for the next couple years. We are also going to try to taper the steroids a little slower starting today. While you may think that having chemo in the hospital on your birthday may not be fun, it will sure be a memorable day for our family and a milestone in Max's journey. We are all very excited to be done with the chemo portion of his treatment and trusting in the Lord for the future.

The final chemo -  celebrating as a family at the hospital!

Clinic Visit

Max must have overdone it this weekend, he developed a cough and some congestion in his lungs.  We are hoping that it is just a touch of something minor.  Labs were low again yesterday. Max got a nasal wash done on him at the clinic yesterday and they suctioned all of the fluid they could find. It is being tested right now to see if he needs to go on antiviral medication. We need to keep him on the higher dose of meds for another two weeks to make sure he gets over whatever he may have picked up and that he doesn't develop any more neurological symptoms.  So far so good, we are praying that he gets over this quickly.  We have another appt with a neurologist today.

Weekend Fun!



Fun day working in the yard as a family 



Thank you Fairy God Mother!

Who would have thought eating an ice cream cone could be so funny?

Endocrinologist and Adrenal glands

We met with an endocrinologist this week and it was very interesting.  Since Max is missing his one adrenal gland his other one was trying to compensate and then we threw a bunch of nasty medication at it and the endocrinologist said that his other adrenal gland has shut down and is no longer working.  This makes a lot of sense when looking at some of the odd side effects that he has been having.  The steroid dose that he has been on for the last 4 months should have made him gain weight and swell up, instead Max has had the opposite reaction, he hasn't been eating great and hasn't gained any weight.  The endocrinologist thinks that Max is having a wasting effect where he may be losing muscle tone instead of gaining weight like so many patients on steroids.  He seems to also have some hormonal imbalances since he doesn't have an acting adrenal gland, this lack of hormones is what is affecting his appetite and thirst center, and growth and who knows what else. The adrenal gland produces hormones for growth and development, metabolism, and cortisone, as well as to supplement all your other glands (pituitary, thyroid, etc.).We are running some more tests the next couple weeks to get a handle on what is going on with all his other glands as well.  We really need to start tapering his steroids to get him to a level that won't give him long term side effects, but it is going to be a tricky balance to keep his neurological symptoms in check and to slowly try to revive his lone adrenal gland.  We appreciate your continued prayers, we will keep you posted on the results...

Happy 4th Birthday Madison!

Care Conference

We appreciate all the prayers for our big meeting on Tuesday.  It was extremely helpful to regroup with all the members of our multidisciplinary medical team.  There were 10 of us and 4 others who had submitted up to date reports and had representatives available to speak for them. Here are some key topics that were discussed:

* Evaluation Criteria - Max is progressing nicely with his treatments, it was agreed that he is not in full remission yet, but has had a partial response so far.  We are glad to hear this and hope to continue to have steady progress, doctors think that the response he has had so far will make his long term outcome favorable.

* Tapering Schedule - It is going to be very critical that we keep a close eye on Max the next couple months, we really need to get his dosage of steroids tapered down to a more manageable level to limit the long term effects that Max will have from the high doses of steroids, but it is a fine line because as we lower the dosage the neurological symptoms may crop back up and we have to do it slow enough to make sure we try to get his adrenal gland the chance to come back to life. We have the doctors word that we will listen to Max's body and go at the rate Max can handle instead of following the clinical trial's suggested schedule.

*Relapse - We discussed courses of treatment and what medications we will use when Max has relapses. He isn't out of the woods quite yet, it is going to take some time for his body and immune system to recover from chemotherapy and because of his autoimmune condition he will continue to be at risk to have a relapse with every cold, virus, and infection that he is exposed to.

*Chemo and Infusions - Max will receive his last dose of chemotherapy on his 2nd Birthday (April 25th). He will continue to have infusions at Children's Hospital for up to 2 -3 years, with the goal to be done with infusions in time for Max to go to school.  There will still be side effects of the infusions and it's hard to know at this point what they will be since he has been having them along with the chemo.

*Future Tests and Monitoring - Max will continue to be followed very regularly by all the disciplines he will have another CT scan next month and then will continue to have scans every 3 months to watch for the reoccurance of the neuroblastoma. He will also continue to have cognitive testing, neurosphychological testing, and testing to make sure he continues to stay age appropriate for all his developmental milestones. There are so many blessing to having twins and for me it is a daily blessing to be able to compare Max and Molly and the new skills they are both making. I think I would be a basket case always wondering if he was falling behind.

*Speech Therapy - He is making excellent progress relearning to speak.  He is beginning to link words together and combine signs and words. He still has ataxic dysarthria and apraxia (slurred speech and issues wtih motor control).  He is quickly learning words so we are going to up the amount of times he is seen by speech therapists to make sure we stay on top of all the new skills he is learning and to make sure we as parents can learn how to work with him at home to make sure he is correctly learning these skills.

*Occupational and Phyiscal Therapy - He is also excelling in his OT/PT, we will continue to be seen by therapists at Children's and in our home therapy to make sure Max stays above the curve in all his motor skills.  We are really focusing on his fine motor skills and we are all keeping a close eye on his tremors and developing strategies for managing the tremors. 

*Vaccinations - I have appointments for all 3 kids to get well-child checkups this month. We will need to hold off on Max getting any vaccines for the time being because of his current condition and immune system, and maybe even hold off on a few for Molly and Maddie.  We will put them on a new schedule to get them caught up in time for school.

We discussed progress in other areas including genetic testing and insurance issues. Max is such a sweetheart and sat through the care conference and said "thank you, bye-bye" to each medical professional individually. He is such a joy to work with and has such a positive attitude through it all, I love watching the smiles he brings to everyone he comes in contact with.

Chemo - Round 5

It's amazing to think we might only have one more round of chemo left! Max did great again today he was much more cuddly and less active which made sitting still all day much easier. Since our last change in medication Max has had some more noticeable tremors that his therapists have picked up on, some more sleeping isssues, and has become slightly more clingy lately, and he also had a big drop in his blood counts.  We have made the decision to up Max's steroid dose for the next couple weeks to see if it changes anything.  We will be watching carefully to see if there is any changes the next couple weeks and then we will begin to decrease the dosage much slower this time.  We have an important care conference coming up this Tuesday with all of Max's doctors, specialists, nurses, therapists, social worker, counselor, etc. to discus his progress, his future, and  to make sure we are all on the same page.  We have also been in conversations with a pediatric neurologic hospital in Illinois to discuss a different treatment plan.  We have a lot of decisions and key events coming up that we would appreciate your continued prayers.

I didn't get a chance to take pictures during today's treatment, but here a few pics from past treatments: