Epilepsy Awareness

We’ve got lots going on, but I’d like to take a break from my normal updates to address something bigger. November is Epilepsy awareness month. It is also Maddie’s birth month. It is usually a month that brings out lots of emotions and reflection in me because it’s hard to get excited about your child’s birthday each year when your child isn’t progressing typically. Each birthday often just highlights the massive gap between where my child is and where she “should” be. Oct 29th was the anniversary of her leukemia diagnosis and so it’s always a bit tough this time of year for that reason as well.

This year as my contribution to epilepsy awareness, I’d like to take you readers through a synopsis of what epilepsy has meant for Maddie and our family. When she was diagnosed officially in Feb of 2009, we thought her seizures were just a temporary side effect of her chemotherapy and that we’d be able to get them controlled with medication of eliminating chemo. How wrong we were.

20090101_4094

Playing just after she turned two, a few days before the seizures began

She had been on her first anti-epileptic drug (AED), Keppra, since we first started seeing seizure-like behaviors. It did nothing but disrupt her sleep and make her behavior terrible. The seizures only got worse. After the official Infantile Spasms diagnosis, her first treatment was high dose prednisone, a steroid. This helped to reduce the seizures but stopped her from sleeping entirely. It also made her scream or cry pretty much the entire time she was awake. I would put her in the car and drive her around the 485 beltway in Charlotte during the wee hours of the morning in an attempt to calm her. That was the only thing that kept her from screaming. Well, that and breastfeeding. I’d guess that she was feeding 8 hours per day at least. And in between would eat an entire bag of Five Guys French fries by herself. She gained almost three pounds in one month’s time. It reduced her seizures a little, but because they were not gone completely and the known side effect of psychosis was becoming problematic, we began a long slow wean, during which we started her next AED – Vigabatrin. We actually saw an exciting 72 hours without seizures right as we started this drug and that led us to raise her Prednisone again in hopes that the combo would stop the seizures for good.

Instead, Maddie ended up in the PICU with life threatening sepsis. One side effect of steroids is that they mask the signs of infection. So by the time she popped a fever, the infection was rampant in her blood. We certainly knew steroids were risky in a child being treated for leukemia because she was already immuno-compromised. But with the type of catastrophic epilepsy she has, they felt it was important to treat it aggressively as soon as she was diagnosed.

IMG_0018

In the PICU when we finally got her off the ventilator and breathing on her own

Maddie almost died that day. And it took her a long time to get back the personality and spunk she had before that PICU stay. When she was healed, we finished the wean of steroids. Vigabatrin alone did nothing for her seizures. She stopped sleeping well during steroids, and it only got worse with the Vigabatrin. About that time, we began to see the emergence of a new type of seizure in her. This meant that despite our efforts, her epilepsy was actually changing for the worse.

20090428_4442

Precious as always, but sporting a little steroid weight

The next two drugs we tried were Clonazepam and Topamax. Clonazepam slows everything down, most importantly the brain. It did reduce seizures, but only when we had it at such high levels that she basically slept all day. So we pulled back to a low dose on it and moved onto the next. Topamax made her lose her appetite completely. I guess we were lucky she had some weight to lose from the steroid trial. It did not improve seizure control.

After failing those drugs, it was decided that she should re-try high dose steroids, but this time we would try ACTH, an injected steroid. So for 7 weeks, I shoved a syringe into her little thigh muscles myself to deliver this powerful treatment for her epilepsy. It reduced seizures enough that we escalated to the VERY max dose, but even then, we never got anything really resembling seizure control. It caused her to gain five pounds, not ever sleep more than three hours at a time, lose the ability to walk because of muscle atrophy combined with the weight gain and have extreme behavioral and emotional issues.  

20090729_4876

This is what high dose steroids do to our girl

After failing this drug, we flew to Detroit for the first time to consult the Infantile Spasms guru, Dr Harry Chugani. Maddie was found not to be a candidate for any type of epilepsy surgery after two PET scans. So we returned home with plans to try one more drug and then a less conventional treatment.

The next drug she tried, Zonegran, actually helped reduce the amount of seizures in each cluster. Zonegran  is one of the drugs we look back on as having been good for her – but it affected her cognitively, she seemed to have trouble remembering and using words, she had night terrors and the appetite issues persisted. We hit her max dose on it and were nowhere near having good control of her seizures and so we moved onto her next treatment, the Ketogenic diet.

20090912_4937

On a quick trip to Myrtle Beach for the USMC Ball before Brandon left for Afghanistan, she is playful and fun despite seizures and side effects

I had really high hopes for this treatment. It is thought of as one of the more natural ways to treat epilepsy, and by the time we got to it, I was feeling extremely frustrated with the lack of results from AEDs and all of the side effects she had to endure during each med’s titration and wean. At this time, she was still on Keppra, Clonazepam and Zonegran. That’s the trouble with epilepsy and AEDs. You often think you are having some seizure control and are afraid to make changes. Every wean seems to make things worse than before you introduced the drug, so at a certain point, you just keep giving them to your child (following your Neurologist’s advice) because it seems more dangerous to remove them.

Upon starting the diet, we had a few days of increased clarity and energy. But that was the end of her good results. Despite tweaking it and following an extremely strict regimen for 6 months, we never again saw anything good from the diet. She actually lost many of her skills while on the diet. As it was happening, we were constantly reassured that she was just lacking energy and that when we tweaked things to get her energy levels back, she would be the Maddie we knew and loved. That was never the case. When we finally called it quits, she was functioning at below a 9 month level in most cognitive and motor skills. I could leave her on a bed and she did not have the skills or motivation to sit up or roll to get off. She was three.

20091130_5367

Her third birthday “Keto cake”

While she was on the diet, we weaned her Zonegran. It increases the risk for kidney stones while on the diet and there is some evidence that the diet works better without many AEDs. Unfortunately, that only led to more seizures. So when she came off the diet, she was still on Keppra and Clonazepam. The next drug we tried was Lamictal. It comes with a risk of Stevens Johnson syndrome, so we titrated up extremely slowly to be sure she did not get the rash that indicates this dangerous condition. When we got to the target dose of it, seizures had only worsened, so we immediately began weaning it. At some point around this time, we weaned off of Clonazepam and onto Clobazam, a newer benzodiapine which has less sedative effects and supposedly patients do not so quickly need dose increases because of their tendency to cause physical addiction.

small 6018

I can walk again!

If you’ve stuck with me this far, thank you! I frankly hate reliving this….but I am putting all of this out there for a reason….

20100316_5965

One of her many EEGs to monitor seizure activity. She is not a fan

The next drug we tried was Banzel. Maddie was extremely blessed to experience 2 months without seizures. It was an amazing time. I remember running my first half marathon during this time and praying and reflecting back on the two years of seizures and thanking God for finally giving my child a chance at a normal life again. That was really the only time during her battle with epilepsy where it really seemed like we might actually be able to beat it.

So while Banzel gave us an incredible two months, it was not without struggles. Every time I increased the dose, she would completely quit talking and walking for a few days. It was obviously very scary to watch, but with each increase, I saw fewer and fewer seizures. It felt like something good might be happening. So we stayed the course. And eventually the result was good.

IMG_7941

Fun exploring at the beach during a time where she wasn’t falling constantly!

But that is one of the hardest things about epilepsy drugs. We, as parents, come to accept that there WILL be some undesirable side effects of every drug we try. We just hope the results outweigh the negatives. And for Banzel, they did. She is actually still on Banzel to this day (three years later) because we are afraid things could be worse once we remove it. But the two seizure free months back in late 2010 were the only good times we got out of it.

When the seizures returned, they came back worse. We quickly escalated doses of Clobazam and Banzel in an attempt to reassert control. We spent close to a year tweaking things trying to get it back. But we never got there.

IMG_8194

This EEG was right after the seizures returned when she was only falling rarely

Her sleep difficulties had led us (during this time) to try prescription sleep meds too, Tizanidine and Chloral Hydrate. Her doctor felt that if we could get control of her sleep problems, maybe we could reduce the seizures, since she was prone to them when tired. Both of these drugs just came with side effects, and neither fixed the underlying sleep issues. She actually experienced severe withdrawal symptoms while weaning off chloral. Eventually, we weaned Keppra and after 2+ years of awful sleep abnormalities, and we finally got decent sleep for a little while. We never really suspected it as the cause, but clearly it had been contributing to her inability to maintain a normal sleep schedule. I also then put my foot down that she would never again be on more than three AEDS at a time. I realize that sounds silly. Now, I think I should have said no more than two…..but at the time we still felt she NEEDED Banzel and Clobazam and we were afraid to see what would happen if we took them away.

IMG_1427

Another trip to Myrtle Beach for the Marine Corps Ball, just before another deployment

The next med we tried was Vimpat. By this time I had grown weary of the constant titrations and weans and how it wreaked havoc on every aspect of her life. We went extremely slow. This drug did not improve her seizures at all, but during this wean, a new, much scarier seizure type emerged.

Her next treatment started once we had moved to Raleigh and when we were near Duke and UNC and could get to a good ER more quickly. Despite having sworn never to use them again, we decided to try high dose steroids once more. So this time, we agreed to have high dose “pulses” of steroids, for three days per month. We started the first course in the hospital so that she could be monitored closely. We didn’t see major improvements, but were encouraged to give it more than once to work. After the second round, we called it quits when there was no measurable improvement.

IMG_1722

EEG monitoring at Duke while starting high dose steroid pulse therapy

By this time, we have run out of “good” drugs to try. There are a few that work well for other epilepsies, but not hers, that we can still try. There are a few others we haven’t tried that are contraindicated in her because of a genetic mutation she has and another because of her history of leukemia. So we decided to re-try a drug that had worked reasonably well for her in the past, Zonegran. After her second dose, Maddie went into her first episode of Non-Convulsive Status Epilepticus, essentially a seizure that doesn’t end. Luckily, Diastat, a benzodiazapine that I have kept on hand for years to use as a seizure rescue drug, stopped the NCSE without us having to go to the ER. That was the end of our second trial of Zonegran.

That is the point when we really began seriously considering surgical options, either the Vagus Nerve Stimulator implant or the Corpus Callosotomy surgery. We flew to Detroit for a second round of testing to make sure she was still not a candidate for any of the better outcome resection surgeries. She was not. After being sedated for the PET scan there, Maddie had her second episode of NCSE. At that point, the thought of trying any new pharmaceutical treatment was extremely scary, given that anything new introduced into her system seems to start episodes of NCSE.

We made the extremely scary decision for Maddie to have the Corpus Callosotomy surgery. As most you know, she had this surgery on July 8th. Her results were outstanding at first and she made immediate progress in many skills for the first time since she was two. It was amazing. But seizures have been gradually creeping back in, and just last week she began having a mild version of her drop seizures again. She is falling from them now, but I can usually catch her, as they are a little slower than they were pre-surgery. She hasn’t really started losing skills yet, but she seems frustrated a lot (possibly because she knows a seizure is coming).  So it is time for us to make a decision about her next treatment.

IMG_2690

Asleep in the PICU at Duke post CC surgery

IMG_2706

Her incision runs almost ear to ear, this pic is taken before all of the complications started with the wound draining

It will be an extract from the cannabis plant. The reason for dragging y’all through that whole history of pharmaceuticals is so you can see that we have not arrived at this decision lightly. She has failed almost all of the conventional treatments available to us and so we have decided to try something else. As you may know, medical cannabis is not legal in the state of North Carolina. I plan to work as hard as possible to convince legislators here that children like Maddie should have access to what has been life-saving medicine for so many other children with intractable epilepsy. I desperately want to be able to stay in our home, with my husband (and Maddie’s dad), near my family, where we have a great routine and a great support system. But we are not willing to wait so long that we allow for her seizures to get back to where they were pre-surgery. It is just too dangerous. So if I am unsuccessful in getting the law changed to allow Charlotte’s Web extract to be imported, Maddie and I will leave Brandon here and move to Colorado where she will have access to this medicine, which has been so successful for many patients like her.

Intractable epilepsy has shattered us in many ways. At this point, with Maddie about to turn seven and functioning under a two year old level, it is virtually impossible that she will ever catch up. But we cannot continue to play the same game, trying drugs that only slow her down even more cognitively. One of the most exciting things being reported by parents of kids who are just starting on Charlotte’s Web is that many seem to be more awake, alert, and interactive no matter the effect it has on their seizures. I am not Pollyanna-ish, I don’t assume this is a miracle drug for every child with severe epilepsy. But the fact that so many children who have failed most of the conventional AEDs are having such success with it makes it something very different than our other options. There is NO single epilepsy treatment that has the success rate that CW is having for kids who have failed the number of meds our kids have on average.

I do understand completely that not everyone will understand this, without the benefit of perspective we have gained due to Maddie’s epilepsy. I hope that you will support us anyway and support my fight to get the import of this extract legalized here. I will not be fighting to legalize medical cannabis as a whole, as that is a much bigger issue, one which cannot really be addressed in NC for awhile because legislation was just rejected unfavorably in April. What I am seeking is for an extract of the plant, which has less THC than the legal level in hemp products (which are legal to import), to be legal for us to import from Colorado (where it is legal to grow and be used medically). Because of the extremely low level of THC in it, it does not produce the “high” that is associated with marijuana use. It is instead high in Cannabidiol, or CBD, which has been shown to have neuroprotectant and possibly even neuroregenerative properties. This high CBD extract has potential to improve quality of life in patients with neurological problems other than epilepsy as well. But it is hard for much research to get done because of all the legal issues surrounding its growth, testing, shipping, financing etc. There is finally a drug being tested in clinical trials that is plant derived and is high in CBD. Unfortunately, we live nowhere near the trial hospitals and Maddie doesn’t meet trial criteria, as I understand them. I am extremely pleased that there is a drug in the pipeline, but we don’t have the 3-5 years it will take to get it FDA approved to waste.

To read more about Charlotte’s Web, read this. If you have time, watch the CNN Special report done by Dr Sanjay Gupta, entitled “Weed”. It is available here. I could cite loads more articles and new research being reported. If you are interested in helping me make this a reality for kids like Maddie in NC, please post your email in comments (it won’t show up unless I approve it) and I’ll email you back to talk about how you can help. You can also email me that way if you just want more information. As an extremely over-protective mom, a Republican and a proud Marine Corps wife, this is not a battle I ever envisioned myself getting involved in. But I would do anything for my child.

At home, recovering from CC surgery

At home, recovering from CC surgery

Love to everyone,

Liz, Brandon, and Maddie

Advertisements

Steroids, Moving, and Doctor Visits

Maddie has now been on steroids for 36 days and we have 20 more to go (but who’s counting?) until she is fully weaned off them. They do not appear to be her miracle drug. Things have been highly variable on them, so it is truly hard to say what is happening at all right now. She has had days with no clusters and just a few of what we call her “single spasms” and then she will have a fifteen minute cluster and they will seem to be back on their regular every three hour schedule. I honestly have no idea what is going on.

In order to try to find out, we had a short EEG Tuesday morning and a visit with our Neurologist. The EEG showed some improvement, but in the 20 minutes they were recording she had ten minutes of seizures, so it is hard to imagine that it is that much better. The results of the Neurologist visit is that we have restarted the Vigabatrin wean and introducing a new AED, Lamictal. This drug must be introduced slowly and takes about 6 weeks to get to a therapeutic dose. So onward we go…….ever hopeful that we can stop the seizures…..but the optimism of early days is gone. It has been replaced by a skepticism and suspicion of what each next thing may bring.

So, what else is going on with us? We moved to Jacksonville last week. Or at least we moved our stuff to our house on base at Camp Lejeune. It is cute and old and very different from anywhere we have lived before. The floors are the original wood floors (with a new coat of Poly after each inhabitant) and the have all the requisite old house squeaks and groans. It is a about 1000 square feet smaller than our last house, and we even had too much stuff for that house. So we are trying to keep things simple and uncluttered and either donate or store everything we can’t picture needing for at least six months.

For those of you wondering why we have chosen to live on base after always living out in town in the past, I will explain. The base housing is 2.5 miles from Brandon’s office, so he is much closer if I were to need him suddenly (this happens often). It also means we have no monthly bills, other than cable or Internet, so when he leaves on deployment, if I just want to come back to Charlotte, I won’t have lots of bills to worry about. They also take care of our yards for us on base, so that is one less responsibility for me when he is gone. And it is also very safe, as you can imagine. The people on our street have been so welcoming already. There are also great running trails all over base and super playgrounds (not that Maddie is ready for them yet, but I can hope!) and our house is 1/2 mile from the water and fabulous views. So I think it is a good thing, even if it means getting rid of alot of our stuff. Neither of us has had time to enjoy our “stuff” much over the last 21 months, so it is not a big deal. Except that sorting through it all is a major undertaking.

I would not suggest moving while one’s child is on ACTH to anyone. We sometimes think we can handle most anything, but this has been tough. We really hope the sleep situation improves soon because it is just hard to be sleep deprived. I don’t really remember what it is like to have a good night’s sleep. The other night I got 4 hours and 45 minutes in a row and it was like I had died and gone to heaven. Sleep will return to our lives someday, I am sure of it.

After our appointment yesterday, my Mom, Maddie and I came on back down to Camp Lejeune. We had been back in Charlotte for our oncology visit and counts check. Her counts looked good, so that is always good news. It certainly is easier to handle the seizures when the relapse fear is pushed back down for a few weeks. We also had her catheterized Monday to follow up on her possible UTI and the culture was negative for any growth. So that, too, is good news.

We hope to stay in Jacksonville through early August when Brandon leaves for a training exercise in California for a month. During this time, I hope to find and hire I nanny we will love to help out in the coming months/years. Hopefully we can also get the house all unpacked and all of our extra junk in storage. We think that Brandon’s deployment is looming closer than we had originally planned so we want to spend as much time with him as possible. But his Battalion is incredibly busy right now preparing for deployment, and he is actually in field on an exercise right now for 3 days.

I think I actually have more to say, but I am tired and Maddie just fell asleep after having another ten minute seizure. Not good. So I am going to try to sleep while she does.

Please keep our amazing little girl in your prayers.

Love to everyone,
Liz, Brandon, and Maddie

Infantile Spasms

I want to take the time to explain what is really happening to Maddie right now. Infantile Spasms sounds fairly mild as a seizure type, but it’s name in no way accurately describes the effect these seizures have on the brain. Maddie currently has over 100 seizures every day. She wakes up every hour all night, with a seizure at least every two hours during the night. She can no longer walk unassisted. It’s not that her walking is suffering; she has seizures that make her fall down. And they come with no warning, throwing her down to the ground hard. Our Neurologist suggested it is time we get her a helmet. I wanted to suggest it is time he figures out how to stop the &”?*%~# seizures. But we don’t seem to be any closer to stopping them; they have actually gotten worse over the last two weeks. Instead of a helmet, we bought “walking wings” which are used to help a child learn to walk. It has a big strap around her chest with two longer handles that I hold onto behind her. This way when she starts to fall we can catch her before she hits the ground. This is not ideal, but it is the only safe way to let her walk.

I am trying to come to terms with Maddie’s diagnosis and what it means for her future. I know I have said this before, but cancer was a much easier thing for me to accept. There are just two outcomes, survival or death. And I knew how long the treatment was. I guess there is really a third outcome I had not considered, survival – but with lifelong health problems caused by her cancer treatment. Of course, any way she survives is better than the alternative. I selfishly want my child with me no matter what. And I will do anything and everything I can to help her lead a happy and healthy life.

But to watch your child regress and lose skills she once had is the most difficult thing we have endured during this whole journey, other than watching her in extreme physical pain. She is as loving and cuddly and interactive with me as she has always been, but her behavior is less mature and independent than it was 6 months ago. Her speech has regressed as have her motor skills. And if we don’t stop these seizures soon, it may get worse than this.

We are just getting started with the Early Intervention stuff, and I am sure it will help us work on the things she needs help with. I am learning so much from other parents of Special Needs kids, especially those whose kids have had IS too. For awhile, I was in denial that our child would too be a “special needs” child. I just didn’t want that for our child. I know that no parent does. But that doesn’t change how much I am going to love my child. It just takes an adjustment in thinking about what I want for her in life. And I will never get rid of those lofty goals either, I just may need to concentrate a little more on much smaller milestones for right now.

I have added some links to other IS kids’ sites and to more info about IS. I still have hope that we will get the seizures under control at some point, but the damage being done by them every day is very real, and I don’t know what it will mean for her in the longterm.

So I guess this post is a little less positive than most of mine, but this is our reality right now. My days are spent counting seizures and praying for a few more minutes in between. And, oh yeah, we also need to make sure she stays cancer free.

To end on a good note though, I added some new pictures of Maddie from this month.

Happy Girl

Happy Girl

I actually was unsure whether or not to post pictures, because in them she looks so normal. But there is nothing normal about having over 100 seizures a day. But I could not not share just how beautiful she is!

Love to everyone,

Liz, Brandon, and Maddie

Good news!

I just wanted to share that we finally got the news that the flow cytometry was normal! That is where they put the marrow sample through a meter that is really sensitive to count all the various types of cells. And the result was that they are no longer thinking she is relapsing. We actually have already gotten the results of her MLL gene test (it usually takes over a week), and this was normal too.

So this is fabulous news! We have no idea what caused the cells to look so abnormal Monday morning. I am not going to worry about that, and we just hope it will not happen again. We have had bone marrow aspirations to rule out relapse before, but each time it was because her bone marrow was not producing much and we were not sure why. This is the first time we have actually seen possible leukemic cells in her blood and had to rule out relapse. I will say I genuinely hope and pray we never have to go through this again. It was a very difficult few days for us.

We are already back from the beach. Unfortunately Maddie’s seizures have been ridiculously out of control the last week or two. She was not sleeping well at the beach, so we decided to come on back to Charlotte in hopes that getting her back to a normal routine might help.
Thanks so much to my uncle for sharing his fabulous house with us. Even with seizures every hour, it felt a little more relaxing in that beautiful setting with gorgeous views of the ocean and the ICWW from every room. We did not really resolve the housing dilemma yet, but we hope to soon.
Next Monday, we see the oncologist and draw blood counts again. Then on Thursday Maddie has her first session of “play therapy” with a therapist from Early Intervention. We are excited to see what she thinks of it. Then later Thursday afternoon, Maddie will go to see the Neuro-Opthalmologist to see what is going on with her eyes. We are not suspecting that she has trouble seeing, but she has some unusual things going on with her eyes that we want to stay on top of.

Thanks for checking in on us and for continuing to pray for our little girl.

Love to everyone,
Liz, Brandon, and Maddie

More excitement

Someday soon I hope to type the words “Boring week here. Nothing much to report.” Unfortunately for our precious little girl, issues just keep cropping up.

Last Monday, Maddie had surgery to replace her port. The surgery went well and the recovery seemed pretty normal. She also restarted her oral chemotherapy that night. We were happy to feel like we were finally trying to keep the leukemia away again. But by Tuesday evening, her seizures seemed to be getting worse. This made us fear that the chemo could be causing it. There was also
a possibility that it was an effect of the anesthesia the day before, as sedation can sometimes lower the seizure threshold. We decided to give the chemo another day or two and see if the seizure activity returned to the previous level. But it did not, so we stopped it for a few days to see if that would cause them to return to previous levels. So far, that has not worked either, so we are left not really knowing what may have caused the change in frequency.

This Monday we entered the clinic full of optimism, knowing that Maddie’s new port would work beautifully. Instead, we found ourselves in the same old situation as with the old port…..no blood return. I was so disappointed (and frankly, angry) that we just left the clinic once we had tried all the standard tricks to try to get it to work. We decided we would return today in hopes that it was just a fluke. Maddie needed to have blood counts drawn and she was already a week overdue to get her monthly IV antibiotic. She also needed to have blood chemistries drawn because we needed to check her Potassium level again. So that meant without the port, she would have to have blood drawn through a needle; they cannot get what they need with a finger stick. Maddie was really upset after having had alot of action around her new incision at her port site Monday, and I was just too over our day to make her go through anything further.

So we were due to return to the clinic this afternoon. But this morning in the bath, I noticed a strange bulge just above where the new port had been inserted. Much to my dismay, I could actually feel the port’s catheter line pushing outward against her skin on her breast near her armpit. It is not something we ever saw with the last port, and I knew it had changed since her bath last night. So we called the clinic and Kelly had us come on in then. She set it up so that we immediately got a chest x-ray and met with the surgeon’s nurse to see what she thought. The x-ray showed that the catheter which leads into the right chamber of Maddie’s heart had already shifted considerably since its insertion 8 days ago. But it was still in the heart, though not really a place where it would work reliably. So the surgeon’s nurse felt we should access it (insert a needle) and see if it worked and then decide what to do about it. So we headed back up to the chemo clinic where Kelly accessed her. Again, no blood return. Right about that time, Maddie’s oncologist walked in, took a look at the x-ray today compared to where it was when inserted last week, looked at Maddie’s chest to see where the catheter was bulging under the skin, and said, “this port is going to have to come out.” So Maddie has to have another surgery to remove this port.

We have decided to try something crazy and see if Maddie can tolerate blood draws without a port. Maddie still does not understand why we have to stick her either in her port or a vein, but the port can be more painless and is usually more reliable. Sadly, that has not been the case for us lately, and we are going to try it for a month and see how she does with finger sticks 3 weeks out of four and hopefully just one needle poke per month. Of course, if anything weird comes up (which seems like weekly if not daily for us) we would have to start an IV, which is really torturous for her, or we might just have to get another port.

This is certainly not the way we hoped this week would go. But there is a possible upside. Brandon graduates from his school in Quantico this week and actually already had the whole house packed up and moved out on a truck yesterday. As soon as our housing is ready, he will be moving back to Jacksonville NC. Because he will likely deploy this fall, Maddie and I really would like to live with him before he has to leave. It would be a little easier to spend more time in Jacksonville if we can get her used to peripheral blood draws, as there is no one at the hospital in Jacksonville or Wilmington who could access her port for blood draws. Also, the port means a trip to the ER every time she has a fever because of the risk of infection. We really don’t love the idea of having her treated in an ER at a hospital that does not have pediatric oncology patients. We are just used to people who know how to handle cancer and ports, and it is scary to think of going elsewhere. So if we find that she can get by without a port it may make it easier for us to actually live together in Jacksonville.

On another subject, her seizures are no better, and we have just started Topamax along with the other seizure med, Vigabatrin, in hopes that we get some relief from seizures. We met with Early Intervention last week and it was pretty eye opening to actually take stock of all of the skills she has lost since the onset of her epilepsy. She is at least a little behind in everything, but she has alot of work to do to catch up in both fine and gross motor skills. We fear that she will not be able to improve much until we can get rid of the seizures.

So please keep her in your prayers. She really needs a break, and it just seems like it has to be coming sometime soon. She is the most lovable, cuddly, sweet, amazing child I have ever met and this is just not fair that she has to go through all this. As we approach this Mother’s Day, I am the proudest mama ever. But I just wish for something to be easy for her.

Happy Mother’s Day to all the moms out there. Please take a moment to feel truly blessed if you have healthy children. There is nothing better in the world. I wouldn’t trade my amazing child for anything but I would give everything to be able to heal her.

Love to everyone,
Liz, Brandon, and Maddie