Update - Chemo is postponed

The second round of chemo has been postponed. Madelyn's counts came back Wednesday the 14th and her ANC was 72, down from 270. 270 is very low, so you understand how bad 72 is. The good news is her other counts are good. The plan is to check her counts again Monday the 19th and if her ANC is above 750 we'll do chemo Tuesday the 20th.

Otherwise, she is doing well. No fevers. Her spirits are good and she is pretty normal.

Sheila's great aunt Velma passed away Thursday morning. Sheila flew up to NY for the funeral. This is her first time being away from Madelyn and she is hating it. I asked my mom to stay with me for assistance. I am pretty sure I can handle it, but I think it makes Sheila feel better. Now at least she knows I am not feeding Madelyn Cheetos and beer. Sheila is flying in to Charleston Sunday night, and I am sure it will be a reunion to remember.

I want to send out a public "Thank You" to my uncle Sam and aunt Dianne, Dianne's mother Edna, and Bethlehem Baptist Church in Conway, SC. I received a letter from Sam and Dianne on the 17th and enclosed were 3 checks, one from each of them. I can't thank them enough. More so than the money, they have been in contact and praying for Madelyn and our family which is always needed. People ask how we get through this. It is through the power of all of the prayers that lift up our family. It is our intent that when Madelyn is well enough to be out to visit everyone that has helped our family. We receive prayer grams in the mail all of the time and we do read each and every one. It is humbling how awesome people really are. I used to look at the world in such a cynical manner, and I still find myself in shock at some of the atrocities that occur in our world daily. I do, however, have a view into the nature of the goodness of people and am thankful that there are people who love one another because that's what God wants us to do.

I'll update again Monday evening when we know what we are doing next.

With much thanks and love,
The Bell Family

Repeat Blood Counts and MIBG scans

So, we have more blood counts.

The ANC (Absolute Neutrophil Count) is normally >1800. Madelyn's was 1610 on 3/1/2007. It is now in the severe range of <500. Neutrophils are the precursors to white blood cells. Without them, new WBCs fail to be created and she is at a very high risk of infection. So we are to avoid taking her out and no one who is sick in the slightest can be in contact with her. We have to call the doctor if she has fever of >101 or two temperatures >100.5 twice in the same day. Unfortunately, her count only has to be >750 to be treated, so she almost definitely will not be back to full ANC by Thursday the 15th, her next scheduled chemo. We anticipate that she will be immunocompromised for at least the next 2 months.

Madelyn had her MIBG scans this week. It consisted on administering the redioactive iodine isotope and letting her body absorb it. Ideally, the neuroblastoma cells will absorb it well and irradiate in the scans so we can understand everywhere the disease is in her little (19lb) body. We'll have the results when we return to the clinic on Wednesday the 14th.

On a positive note, her lymph nodes are noticably smaller.
On the other hand, her hair is becoming brittle and is starting to fall out.

I need to jump off of here. I'll post more tomorrow.

Love
The Bell Family

First Blood Counts post-chemo

All of Madelyn's counts were good on 3/1, but this is the time where they will continue to drop. We have another appointment on 3/5 to do repeat blood work. We are giving her the Lugol's solution, which is simply iodine tincture. This is to protect her thyroid from the radioactive iodine required for the MIBG scans. We will have 3 days of scans 3/6-3/8. We're not sure when we'll have the results. These scans should show any neuroblastoma in her body. This depends on how the neuroblastoma tissue takes up the dye. The reasons we are getting this done is that now, since she has started chemotherapy, the tumors may actually change and the neuroblastoma tissue may start to go away. It is not possible to differentiate between a tumor with NB or one that has shifted to another type of tissue. So, the MRI might show the tumor is the same size, but an MIBG would hopefully show less or no "glow" from the dye, thus the NB tissue would be going away.

Madelyn is her most vulnerable this weekend, so we will be camping here. Sheila is running out today, but Maddy is staying put with Daddy.

We are still trying to sell the boat to help pay for medical bills. Since I changed jobs, we don't get a full paycheck for me until 3/16 so things are a little tight. Hopefully it is only temporary. ERA realtors have sent some money through their inter-office mail. We are probably going to refinance Sheila's car loan for a lower rate and consolidate her student loans. I know this may seem a little too much info, but I want you all to know that have offered to help that we are trying to get things in order so we can weather this. If we do need help in the future, it won't be before we have exhausted our
options.

I want to take this opportunity to thank Judy Lennon for taking the lead on our fundraising efforts. Larry Maio, our pastor at Seacoast, brought our situation to the congregation last week and they sent us $100. It feels good to know that in this cynical world we live in, people are still good and love one another.

I am going to stop now as I am being beckoned to help clean the house. THank you all and we love you very much.

Round One

I am sorry we haven't posted anything. The wireless connectivity here at the hospital has been a little haywire.

Madelyn went to recovery at around 12:45PM on Friday. She had some oxygen saturation issues in the OR and recovery and had to have her upper airway frequently suctioned and received a repeat breathing treatment in recovery.

The central line was placed in her facial vein/internal jugular. They tried to go for her external jugular which would be a little off her center line of her body, but it was too small. She has two small incisions on her neck and one on her chest. The port-a-cath was placed under her skin between her right nipple and clavicle.

We came up to the room on Friday at around 2PM. Madelyn continued to recover well. She was a little groggy and was really congested. In surgery they gave her a good amount of fluids and this would make her sound more wet.

She began her first chemo treatment at 7PM on Friday. This consisted of the first drug, Carboplatin, going in over the course of an hour and then a dose of VP-16 (etoposide) @ 8PM given over two hours. They then push more fluid. When the first drop of carboplatin went in, I had trouble holding back the tears. You want to protect your children and keep them from harm. You baby-proof your home so they don't drink the Drano. Then for some reason we cannot understand, you're forced into a situation where you have no choice but to shoot them up with stuff that can eat through plastic, which is why special tubing and glass bottles of medicine are what they use. We have to change her diapers with gloves on so we don't absorb the small amounts in her urine. Crazy...

Friday night was pretty uneventful other than our crossing the threshold of innocence. We have poisoned our child, but its all we can do for her now.

Normally, they would give her the daily treatments 24 hours after the last one began, but to get us out of here at a reasonable tim eon Sunday we have changed the interval to 20 hours. Saturday @ 4PM they began just VP-16 alone using the same delivery as Friday. This went fine. Infants seem to tolerate this first round very well, and to be honest, Madelyn is handling it better than I am.

So, its Sunday morning and the last VP-16 for the weekend is scheduled for noon. It will take two hours to run in and then they will push some fluids and send us home.

We have a book from the patient educator with all of our instructions. I will have to review it to be sure, but we're going to be in the clinic a lot for blood tests and checkups.

The drugs, in a very general sense, work to stop actively dividing cells from dividing. The other effects are that her immune system will be suppressed due to the inhibition of good cells like red blood cells (RBC), white blood cells (WBC), and platelets will be impacted as well. The effect of each is:

Low RBCs (Anemia)
RBCs carry hemoglobin, which carries oxygen through the blood. When this is reduced, Madelyn will be a little tired and fatigued. She may show signs of paleness in her skin and especially her mucous membranes (inside her lips and eyelids).

Low WBCs (Neutropenia)
WBCs fight infection, so she will be more prone to bacterial infections. For this, we are giving her antibiotics.

Low Platelet Count (Thrombocytopenia)
Platelets are the clotting components of the blood. With a low platelet count, Madelyn can have issues with bleeding. If she is cuts, gets nosebleeds, etc. we may have issues stopping it. She may get more bruises. We have to be very careful of her bumping her head.

We just spoke with the team and we are going home this afternoon. We have our instructions and will be back in the clinic on Thursday. We have an MIBG scan scheduled for March 6th as well as a hearing test (one of the meds can affect hearing). We had an echocardiogram and her cardiac function is good. She still has a small opening from her right to left atrium but this should close as she continues to develop.

We need to make some calls as her prescriptions are not all that common for pharmacies. We'll update you as things develop. Thanks for your continued prayers. I also wanted to thank our pastor Larry Maio for coming by on Friday. His coming by was a great relief. Also, Judy Lennon came by and is taking the lead in helping us establish a fund for Madelyn's medical and non-medical needs. Judy also brought by Madelyn's new favortie toy, Froggy.

Well, we need to get ready to go home and for her last chemo treatment for this round. The next round will be March 15th and will be all day in the clinic, but no overnight stay in the hospital.

Thanks again for everything!

Update - At the hospital

Madelyn went into surgery at 11:15 and is getting a central line put in for chemotherapy administration. This is a straightforward but serious procedure. The port will be below the skin which will help us when bathing her and reduce her risk from infection. So far, everything is OK. We'll post more when we know. The procedure should take no longer than 90 minutes.

Dr. Pirich called yesterday to tell us that there is neuroblastoma in her bone marrow. The extent to which it is involved is difficult to determine because it was a cluster of cells rather than dispersed, but it doesn't change the treatment plan and most likely will have no effect on the outcome. It's a little discouraging, but it makes our decision to treat even easier.

We have internet access at the hospital and will check periodically and update the blog as we get a chance.


Rick

For Better or Worse...

I entitled this post "For Better or Worse" because some things have changed and our path to wellness for Madelyn is about to take a new course.

Sheila's 30th birthday was 2/15 and we had a small outing on 2/17. As Sheila and I said goodbye to Madelyn to go out for the evening, I noticed that the lymph nodes in her neck on the left side were considerably larger than I had ever noticed. This alarmed us and we called the on call oncologist Sunday. We scheduled an appointment for Monday (2/19) and waited.

Sheila and I were armed with questions before the meeting. We wanted to know definitively what we were looking for to tell us that we should no longer wait. We felt impotent and that we may be waiting too long.

When we met with Dr. Pirich, she examined Madelyn and we all sat down to discuss her findings. To her, this is a significant finding and her gut feeling is that Madelyn's disease can no longer be treated with just supportive care and we should begin chemotherapy. Finally, someone was ready to take action. Suddenly, we were both very quiet when we began to look forward to what the near future holds. While we were now going to attack this disease, the effects of chemotherapy on our beautiful baby girl flashed through our minds. Nausea, vomiting, diarrhea, brittle hair and hair loss are the most common side effects seen within days of treatment. Other, more haunting effects, lay down the road with literally no end in sight.

We initially questioned whether we should even choose to go with chemotherapy. Could this just be her lesions getting larger before they get smaller and disappear? Are her nodes enlarged because she has been sick?

The next step is for us to get a baseline before chemotherapy. This includes another MRI session which includes her head, neck, chest, and abdomen as well as a repeat bone marrow biopsy/aspirate. This was scheduled for today. We went in at 7:30 and she was on the table at 8:45. Everything went well and we had her back and on the way home by 12:30. Dr. Pirich called at 4:30 to tell us that:

1. The size of the lesions in her liver are relatively unchanged from 1/30, but the number had increased.
2. The primary tumor in her chest appeared only slightly changed with some increased tumor tissue toward the left neck.
3. The nodes in her left neck were larger.
4. The nodes in her right neck were now large enough to consider pathological (with disease).

We were previously unaware of involvement of the right neck due to the fact that previously they measured less than 1 cm. This is significant because to Dr. Pirich this changes her stage from a Stage 4S to a Stage 4 (most serious). I read the staging requirements and lymph node involvement for Stage 4 is "distant". I am not sure how distant is defined so I am not overly alarmed. Dr. Pirich's feeling that we should begin treating with chemotherapy are reinforced by the MRI findings.

Regardless of her stage, the treatment is the same for Madelyn. Sheila and I have accepted that chemotherapy is the next logical step. Dr. Pirich provided us with drug facts on the four agents. The plan is to have a "round" of chemotherapy which is 4 separate sessions 3 weeks apart. The first session will be this weekend. Madelyn goes in Friday for a central line and will be admitted for the first run of chemotherapy after that. We still wait to hear the results of the bone marow biopsy, which should come back Thursday.

Once she is admitted, we will also have a echocardiogram (sonogram of her heart) and hearing test. Some of the meds after heart rhythm and hearing, so we need a baseline for that as well.

If there is any good news, it is that at the end of this round of chemotherapy, we expect to stop tumor growth and actually reduce the size of existing tumors. We will do some tests at the end of the second round to determine efficacy. After the first round of chemotherapy this weekend, we hope that future chemotherapy can be done in the clinic and will not require admittance.

I will update this posting periodically. Please check back and thank you for your continued prayers for Madelyn.

Love,
The Bell Family

Update on VMA/HVA levels

On 1/30/2007 we had our followup visit after getting new MRIs. At that time we took some urine for her regular VMA/HVA levels. For those of you who forgot what those are, click here to review. Her levels on 1/8/2007 were:
VMA: 223
HVA: 160

From her urine on 1/30/2007, both levels have risen sharply. Her new levels are:

VMA: 911
HVA: 423

Upon speaking with Dr. Ron we discussed the results, which initially floored us. The rise was to be somewhat expected because her liver is larger, so there is more neuroblastoma tissue in her body. Sheila and I just didn't expect this much.

Madelyn has a little bit of an upper respiratory infection right now (from me, sorry). She hs a mild inner ear infection and has some fluid in her nasal passages and throat. Otherwise, she is developing so well. On 2/12, her weight was 17lbs 6.5oz. She is doing everything well.

Dr. Ron says that our main focus is her behavior and her general presence. The main things we are watching for are difficulty breating (assuming she's not sick with a cold) and her appetite (which is great right now). If we see any behavioral changes in these areas, we'll have to revisit our current treatment plan. Right now though, we are staying the course.

I noticed a vein on her right side over her liver and remembered seeing a picture of a 1 month old infant with hepatomegaly (liver enlargement) secondary to neuroblastoma and the skin on the abdomen was very thin and vascular (lots of veins). Sheila and I talked and we are going to begin taking pictures daily of her torso and I want to start measuring her abdomen. Her torso will increase in circumference due to normal growth, but I want to measure her all around, then center line abdomen to center line of her spine for each side. While the circumference should increase, it will help us know how she is changing bilaterally and we can chart out both the circumference from center line to center line aswell as monitor the ratio between the two. We hope for a normal progression and regression, but looking at her is so subjective. To say it looks bigger gives no quantification, and those of you who know me know that I am a details and number guy. No one as said to do this, but its free and can indicate changes that we should know about. Seeing her everyday makes it difficult. This should help. At least we can do something because these 3 weeks between visits are killing us.

We missed church Sunday because Madelyn was sick, and we didn't want her exposed to new infectious stuff or to bring her maladies into the nursery at SeaCoast.

I am coming to the end of my time at TSFG (2/23 - last day). I am really going to miss those guys and I hope we'll stay in touch, but I am a realist. I promise to make an effort, and this is a record to remind myself to do so. For all of the things that may frustrate me about the job, I do love the people. I'll be starting at Blue Cross Blue Shield (round 2!) on 2/26/2006. I would have liked to take some time off, but we really can't afford to not earn as much as we can while the getting's good. Sheila is doing fantastic! She and Debbie Thrash have "inherited" a subdivision and they are busy getting organized to market the heck out it. Sheila started really pressing because of the time she had to spend with Madelyn over the holidays and during the diagnosis of this stuff. Like any sales job, aany dry period takes time to recover, but she's on the right track.

Thanks for all fo your continued prayers and support.

Love,
The Bell Family