Homecoming

Things are looking much better. I won't go into all of the details but it looks like Mary Ann and Will can finally come home tomorrow. That means the girls finally get to meet their new baby brother after a week. Again, I won't go into the detail tonight, but we have an appointment at Primary's for Will and Amanda on Thursday. We are all very excited to get him home and I know many others are excited to finally see him as well. We will update more when we finally get him home.

Quick Update on Will

I have just a few minutes before having to get back up to the hospital with Mary Ann and check in on the girls at Grandma's. I thought I'd try a very quick update. Mary Ann was released yesterday but they were able to find an unused room in the hospital to let her stay in so she could stay close for feedings. The room is in an unused part of the hospital and very quiet so we decided to bring the girls over and let them spend some time with Mom which was nice. Will go moved yesterday, too. From NICU room 1 to NICU room 2. That's about 40 feet tops. But it is a small sign of improvement. He still hasn't been able to get his glucose levels under control on his own so they still have him on IV's and added a feeding tube. He also became jaundiced so he's under the fry warmer lamps. Poor guy. He had the shakes last night from messed up sugar levels and was just jittery. But on the other side of things it all looks good. Its just a matter of getting him the food and supplements he needs to get him bigger and stronger and then feeding on his own and things should work themselves out. Thank you to everyone who has prayed to get him here and continue to pray on his behalf.

Baby Brother

He made it. He truly is a miracle. I won't go into all of the details of why there were so many doubts about him getting here. I will just tell you that our family is blessed, excited, and grateful to have him here.

Weighing in at just 4 lbs 14 oz and 18 inches, Will is a tiny guy. At about 4:30 pm August 25th he was brought into this world whether he was ready or not. He looks very good until the blood result came back with a glucose level of 12. We didn't know what that meant either until they said they like to see that at least a 60. So he's in the NICU for a little while so they can stabilize him and watch him for a bit. His levels were stable late last night and seemed to be doing just fine.

He's much quieter than his sisters so far. Mom's doing fine. Things went 100 times better than the last delivery. The girls won't be able to see their brother for a couple of days until Will is out of the NICU since they won't let children in. Amanda is very excited for her baby brother, though. Erin, well we'll see if she truly gets what's going on.

MRI Results

Amanda handled her MRI really well. They bribed her with all kinds of toys and prizes. The anxiety leading up was far worse than the event itself and I think she's starting to getting more used to procedures now.
The radiologist read the scan very quickly and the doctor came to tell us the results before Amanda even woke up. As we have said before, we are very impressed with Primary's and their ability to be so organized. Amanda's scan showed "no toxicity to the brain" from the Methotrexate. Everything else in the scan looked good as well. It is a big relief. It is still obvious that she is not tolerating the drug well and we still have the issue of what to do with future doses. She is done with the heaviest dosing regiment, but will have another dose in her lumbar puncture in two weeks. The doctor felt this is long enough to give her body a break and we will have a "see as we go" approach to determine if another drug needs to be substituted. He was not terribly concerned about another "incident" as the drug has had time to decrease in her system. We'll never know for sure if it was a seizure, but we do know that the high level of Methotrexate caused it. We just need to exercise good judgement with her, trust the doctors, and take her back in if any problems continue. We are looking forward to a few days of rest and recovery from a very stressful week.

MRI

Amanda had clinic today. Most of our time was spent talking with the doctor trying to figure out what happened this past week and what to do about it. We are left not knowing if it was a seizure or passing out. Aside from this the doctor was concerned about the extensive headaches she gets after treatment and how they are increasing in rhythm with the Methotrexate drug. "This treatment round is usually a break for people" was his comment. She had a good week around the beginning, but she is progressively struggling the more they increase the drug. So the solution to figure out how much the drug is affecting her is to do an MRI tomorrow. The nice thing about being an oncology patient is that you get in for special testing within hours when it takes others weeks. The MRI is needed because Methotrexate often shows changes on the brain when people become symptomatic like Amanda. If there are problems then her treatment will need to be regulated in the future because this drug is taken on a regular basis for the two year maintenance process. For today, he skipped the drug despite it needing to be the largest dose in the treatment regiment. Because she is in the best possible recovery tract, he felt we have some wiggle room. In my mind I was cheering while Amanda was hysterically crying about having to do another MRI. For me it means her being much stronger and healthy for when the baby is born. Unfortunate for her, MRI's are the most dreaded of all treatments because of the isolation and weird noises. But, this time she will be sedated. She's still pretty upset about it though.

Amid all this, the baby has miraculously stayed put. My doctor agreed to induce me next Tuesday instead of the following week. It seems a good compromise between Amanda's next treatment and the baby's healthy growing time. I'll be 38 weeks and have never made it to 39 anyway. I hope it will be what is best for both his health and Amanda's.

AMBULANCE

Our many neighbors and kind Ward members deserve an explanation for the commotion at our home yesterday.

Amanda has struggled with really bad headaches, mood swings, and hasn't been sleeping or eating as well since her last treatment. She seemed to turn around yesterday and we arranged a play date with her cousin. My sister had stuck around, fortunately, and after an hour or so of playtime we both found Amanda unconscious on the kitchen floor. From other experiences I can handle first aid for passing out (people usually come around pretty quickly), concussions (which Amanda's had a few), and seizures. The problem was that I couldn't figure out what was going on. Amanda would not wake up, we didn't hear her fall, we didn't know how long she was out, she didn't appear to have hit her head, and she's a medically fragile kid right now which created an entire list of fears in my head as a mother. Paramedics couldn't get her to wake up either. She could have been out for over 10 minutes. When she did come to, she was hysterical and incoherent until they loaded her up and we were on the road to Primary's. She just remembers riding her stick horse, feeling dizzy, a bad dream, and then being in the ambulance.

She is currently home and doing fine; just physically tired and emotionally tired from life not being fun anymore. A bunch of tests were run with no conclusive answers. I talked with the Oncology clinic today and we are of the opinion that it likely was a seizure. Severe headaches and seizures are a rare side-effect of one of the IV drugs she is currently on. So we plan to involve somebody from Neurology at our clinic visit tomorrow. We're not sure what the solution will be.

It was a very traumatizing experience. We are very tired. We keep praying that I don't go into labor in the middle of all of this. She needs to be more stable before the baby comes. We are trying to hang in there and just keep praying that it all works out. I've decided that's the best thing you can do when you have no control over your outcomes in life.

Routine

Amanda made counts for her treatment on Monday. It actually felt very routine. Check in, blood draw, wait for counts, talk with the medical staff, go to RTU, recovery room, finish off with chemo, get that pain medicine in her before we hit the road, and get the IV hydration pack whirling as quickly as possible. I think we have finally figured out a better routine as her recovery is proving to be more manageable. It still is taking her several days to bounce back, I've figured out she needs the hydration pack an extra day longer, and the pain/nausea meds are needed for a few days or her head is buried in the vomit bowel with a huge headache. It's not easy, but she still claims that getting her port accessed is the worst part to her because it involves a needle. We did have a huge melt-down this week about being lonely. And she's been a lot more lethargic than usual after this treatment. The tough parts are expected.

As for our baby, he is doing so well that the doctor wants him to cook two more weeks. That's a good thing because our next chemo date falls on what was supposed to be his birthday. I have no doubt he's just going to come on his own rather soon as all the impending labor signs are looming. Amanda is getting very excited, but clingy as I know she is anxious about this big change. Overall her health is strong enough for me to feel O.K. about leaving her care up to Dad and extended family for a while. My blogging may get more sparse, but I plan to update about any changes.

I'm overdue for promised pictures. The top picture is Amanda playing with her cousin. Sienneh was a good sport about wearing the mask while Amanda's ANC was really low. They are both so much happier when they get to spend time together!

The hydration pack is quite heavy. I still have a knot in my back from mine. Amanda came up with the solution to use a wagon. Here's Erin chasing behind as Amanda maneuvers through the house. Wish I had thought of using one.












Keeping Amanda and Erin busy has proven to be a challenge for me in my diminished energy state. The solution; put Erin's in charge of all housework :)

Much to my surprise, Amanda's hair is growing back in and she has no mouth sores as anticipated. Even though she has been completely worn out all week and has side effects I didn't expect, I left clinic feeling fortunate that she is not as sick as some of the other kids we see there. I'm very fortunate to have these two little girls!!! They have both proven to be very challenging, but these smiles remind me why it's worth it.

Quick Update

I am so happy to say that Amanda is doing GREAT! Her hair is even growing in, much to my surprise. The medication side-effects seems to be calming down a bit right now. The social isolation still gets to her and we invited her cousin over to play today out of desperation - with the mask being a requirement. Amanda and I agreed that she should not have to wear a mask in her own home, so it is the responsibility of our healthy guests when counts are dangerously low. Fortunately my niece will do things for me that she won't for her mother (sorry Jenny, but it's true). It's amazing the difference play time with a friend makes.

We are down to the last 15 days of the pregnancy. With each pregnancy I get excited when the expiration date on the milk exceeds my due date. My frantic nesting has been replaced with a lot of fatigue, discomfort, and fluid retention. But I will gladly take it over the hyperemesis, which fortunately continues to improve. I've adjusted to drinking without my PICC. I've had several questions why it was removed. I'm certain I have a clot, or clots, in my arm. So, I'm on an aspirin regiment (again). Oh the joys of pregnancy! I look forward to just focusing on my kids again and not so much my own health.

I promise more pictures soon. Our memory card ran out and we just got the new one. I know words are more boring than pictures, so I appreciate those of you that take the time to actually read how we are all doing.

The Difference a Good Doctor Makes

Amanda surprisingly made counts for her treatment Thursday (barely). I was very nervous about it and spoke up to the physician assistant about the problems with the last treatment round. The response was to just give her the nausea medication, which we did last time, and then he ordered a different nausea med that doesn't typically work as well. You should order what works best for the patient, not what med is your favorite (my medical Arch Nemesis list begins). Fortunately, the doctor has the final say so and I am very happy with Amanda's physician, Dr. Bruggers, who changed the order when I made the request. If I were to choose a doctor based on clinic visits, she wouldn't be my choice. She's a bit quick and sometimes prickly. But having worked with her closely during out diagnosis phase she proved to be one of the most competent doctors I've ever met. She is so confident of Amanda's recovery that I often replay in my mind her optimism in telling us what the outcome is expected to be. The best part about her is that she does not tolerate patient discomfort. She goes out of her way to find a solution. Even when Amanda was hospitalized, she chewed out a nurse when she saw how black and blue Amanda's arms were from endless blood draws. She knew there was a more comfortable way to get what was needed and she made sure it happened. So for clinic, Amanda was given a higher dose of the better nausea medication, a strict medication regiment to keep up on the nausea/pain, and home IV fluids for a few days. Whatever Dr. Bruggers did different worked and I hope it will continue the next few rounds. Amanda of course came home feeling ill, but she was able to tolerate the pain medication before the headache and body aches exploded. We avoided the extreme pain/nausea cycle. Amanda was even riding her scooter the next day, much to my surprise. I'm much more optimistic that she can handle the next two treatment rounds. I continue to pray that she won't be miserable while I'm away from her.

She's still struggling with bouts of nausea and is hooked up on IV fluids as we speak. Last night we were both up at 4:30 am with nausea. We both enjoyed our Zofran medication (God's gift to the nauseated), a bowl of cereal (the must have diet for the nauseated), and talked about ports and PICC lines. Not your typical mother-daughter bonding activity. But it makes me chuckle that this feels like a normal thing to do now.