Fine, We Did It

Rather than risk another potentially serious head injury, we bought toddler beds tonight.

I didn't want to.

I don't like new stages when it comes to the kids.

They are safe in their cribs (other than the falling out on their heads part). They look cute in their cribs. They have been in those cribs since the day we brought them home from the NICU. And most importantly...

They can't get out of their cribs (okay, so they *could* get out, but I mean not easily and without a considerable amount of risk-taking).

Those cribs represent a safe haven for my sweet little babies and taking them down makes it perfectly clear to this momma that my babies are growing up. Errrrrr....I don't like it one bit!

I was telling my mother in law of the numerous horror stories I've heard about the triplet-transition into toddler beds. Most of the triplet parents I read about online have to remove EVERYTHING from their kids' rooms other than the toddler beds. As you can imagine, giving three toddler-monsters the ability to get out of their beds while they are alone in their room is a sure-fire recipe for disaster!!?!?! Errrrrr....I don't like it one bit!

I will of course update you all as we make this transition. It won't be for a few days as we had to order Cara's bed online. So, I have a few more days to get used to this idea :)

An area for prayer: I have been doing a lot of reading about other NB kids like Brady (Stage III, intermediate risk) in the message forum I belong to. The topic of scanning schedules came up and I am surprised to learn that kids just like Brady have a more intense and thorough post-treatment scanning schedule than he does. For example, many kids are getting a MIBG scan done quarterly. If you remember, Brady had this test done diagnostically in those first few days. It involves being injected with a slightly radioactive substance that is taken up by areas active with NB. In some of the cases I've been reading about, urine levels have been normal despite a relapse being present. And in other cases, a relapse was only detected on the MIBG, not with MRI. So, you can imagine my uneasiness about only relying on MRI and urine tests. On one hand, I want to limit Brady's exposure to radiation, especially given how often he will need XRAYs because of his spinal deformity. But, I also want to make sure that we aren't missing something. Matt and I have been discussing this and trying to decide if we want to push the issue with our doctor and get more in depth testing done at Brady's next scan date (April.) Thank you for your prayers as we continue to deal with many post-treatment issues.

FINALLY A PHONE CALL!

Just got the call at 8pm from our oncologist...Here is the plan:
1. No results yet from the MIBG scan, hopefully we will have those Monday afternoon.
2. Monday 9:15 Bone scan done under sedation (thank goodness)
3. We will be admitted to the hospital after the scan.
4. Tuesday morning he will have surgery to have the Broviac placed in his chest and an echocardiogram (all done under anesthesia).
5. Sometime Monday/Tues we will be meeting with the oncology team to finalize the treatment plan.
6. Chemo will probably be starting Tuesday night. We will be in the hospital through the weekend.

So it begins. I can't believe this is really going to happen. Please pray for courage, comfort for Brady, and a sense of security for our whole family.

The End of a Long Day

It is 9:15pm and we still haven't heard from the oncologist regarding the results of the MIBG scans over the past 3 days. We have called the "on call" service two times and the farthest we got was speaking with the on call doctor who had no clue what was going on with Brady. We want the results of this test...we were told we would be called tonight not only for results, but to have the plan for Monday. The waiting is agonizing, frustrating, and really unfair. Add this to the stress of having to watch Brady endure another scan today without sedation. Although painless for him physically, he cries throughout the whole scan unaware of why he is being strapped down and put into a confining tube. As you can tell, spirits are low tonight. He is still up and upset at this hour, he has only slept about 1 hour all day. He is agitated, overtired, and is experiencing painful constipation.

We are praying for a weekend of some peace before we begin this battle. Pray for Brady's comfort, his sense of security... Pray for some peace within our family. Our little world is so vastly different than what it was just two weeks ago. That is difficult for me...I'm overwhelmed by everything and just keeping praying "strength for today God and hope for tomorrow."

We will update as soon as we hear anything for the doctor.

Plan for Friday

Today we traveled to Strong (on clear roads this time thank God!) at 10:30. We decided to get there early so that we could have lunch with Brady in the cafeteria. He seemed to love his french fries with ketchup...could there be a cuter boy? Our first stop was to meet with the nurse practitioner from neurology. We had expected to have his stitches removed...guess what? They are dissolvable!!!! Praise God he didn't have to sit and have them all removed!!! He was still miserable while she checked out his surgery site, but we dodged a bullet there. We then headed down for day 2 of his MIBG scan. He didn't need to be injected again today, the solution is still in his body from yesterday. Even though there was no pain involved, for Brady this was one of the most difficult things so far. He has to be strapped to a board using this vest type thing that confines his legs and body. They scan his body in segments for about 5 minutes at a time in a machine similar to an MRI tube. The total scan time is was about 20-25 minutes, but it felt like an eternity. At times we had to hold his head still or his arms down. He just screamed the whole time and cried out for me. We also found out that we do have to go back tomorrow for a 3rd scan..ugghh...Matt is going to go to work tomorrow. My friend Lynn will be coming with me and mom will be home with the kids.

We just received a call back from our oncologist. The plan has changed a little bit for Monday. We will go on Monday and Brady will have surgery to place his Broviac catheter, have a bone scan, and have an echocardiogram. After his surgery we will be admitted, but chemo will not start until Tuesday afternoon. From there it will be 3-5 days in the hospital as chemo is administered.

Many people are asking us how the rest of the family is holding up. There is no doubt that they are being well-cared for! Our parents are amazing and love and care for Eli, Cara, and Allie just as we would... Eli spends his days "beezzering" as we call it. He is a happy wanderer who loves to just go from place to place, never spending a whole lot of time doing one thing. He is a sweet sensitive boy who I know misses his care-free days playing with Brady. Cara spends her days caring for her baby-doll. Despite her loud, assertive personality, Cara has a strong nurturing spirit, and she really senses that I have been upset lately. Allie is God's daily reminder to us that His love is always with us. She is a perfect baby in every way...Matt and I just love each of them so very much.

No Big News Today

Matt and I took Brady to Strong today for the first part of his MIBG scan. He had to have an injection of a chemical that will allow areas of neuroblastoma to be visible when scanned. It was very difficult to see him so upset, so confused. I'm struggling with that as a mommy right now. I guess I took for granted always telling my babies that "it's okay, you're safe." I feel like I can't say that to my Brady right now. I just keep reassuring him that I'm there and that I love him.

The scan itself only took about 3-5 minutes and he wasn't sedated. Tomorrow we have to be at there at noon to meet with neurosurgery to get his stitches out, then go back for the second part of the MIBG scan at 1pm. Depending on the quality of the images, we may have to go back Friday, maybe not.

Please pray in the following areas (remember how much we appreciate these prayers!!):
1. Continued comfort and sense of security for Brady: The medicine continues to alter his personality and his ability to tolerate all of this stress well.

2. Safe travel for us in the snowy weather.

3. Peace of mind for Matt and I. There is SO much information out there. There are SO many stories of children who have survived NB, and many who haven't. We are scared and overwhelmed by the amount of info out there. Pray that God is leading us towrads the right treatment for Brady. There are options for treatment at a hosptial called Sloan Kettering in NYC. We have asked our doctors to consult with them, but we are constantly second-guessing that maybe we should just seek treatment there.

4. For our families and friends who are here joining us in this fight. In big ways and small ways so many people are stepping forward to help. Pray for all of those organzing help for us.

Tentative Plan

We did hear from Dr. Asselin (Brady's oncologist) this morning at about 8:45. This is the basic news we have right now. The samples that were collected during surgery and during the bone marrow biopsy continue to be tested and analyzed. She gave us good news that the samples continue to show "favorable" results, meaning that the more favorable they are, the better they will respond to treatment. This continues to be a work in progress and we will continue to get more info throughout the week. Brady does need to have a MIBG scan: "An MIBG scan uses a chemical called metaiodobenzylguanidine that is slightly radioactive to identify areas where the neuroblastoma has spread. It is a very sensitive method of detecting the spread of cancer in bone and soft tissues." We have to be there tomorrow for the first part of this process. They will use an IV to put the chemical into his system, then we wait 3 hours, then he is scanned. This process may also have to be repeated Thursday and Friday to get an accurate picture. We will be home each night after the scan. We also are meeting with neurosurgery Thursday to check Brady's surgery site to see if staples can be removed. On Monday we will be back at the hospital to have another bone scan done, probably the surgery to place his Broviac catheter, and possibly to start chemo. We will be admitted to the hospital at this point for 3-5 days. The catheter will be surgically put in place to administer chemo. It basically is two lines coming of out his chest that can be hooked up to administer drugs, eliminating the need for IVs. Blood can be drawn from it as well. My mom had this with her 2nd battle with lymphoma so I became very familiar with flushing it and keeping it clean.

That is the news of today. We are going to give Brady morphine to help him sleep today as he is having difficulty staying asleep for any period of time. What an amazing boy he is! Would you believe he crawled across the playroom today and even crawled up one step to get out of the playroom!!! He's my hero!

I'm posting a few pictures of our family so that our "new friends" can get to know us a little better. I hope they bring you a smile today...