Reality – before round 5

As I sit here on the eve of Logan’s fifth round of inpatient chemo, also my birthday, I am overcome with conflicting emotions. Part of me is excited to go back to the hospital and finish inpatient chemo once and for all but there is another part of me that just wants to stop and not do anymore chemo. While I would NEVER not do chemo, the thought does come across my mind. Just knowing the discomfort Logan will be in in just a few short days, kills me! He has no idea that by this time next week, he will be sick, miserable and in pain. But on the positive side, this is THE LAST inpatient round of chemo! My biggest fear, however, is that he regresses and we lose the physical and mental progress we have made in just the past couple of short weeks at home!

Logan makes so much progress at home! He is now okay with transitions, moving from sitting to laying down. He likes to be held now. He doesn’t fuss every time we change his diaper or get him dressed. He’s really trying with the binky and the bottle. He’s swallowing very well. He’s putting his hands in his mouth. He giggles. He has a tickle spot. He’s very observant and interactive. He’s making all sorts of noises. He’s entertaining himself. He’s doing NORMAL baby stuff….it’s such a wonderful thing to see!!!

But one thing we need to keep in mind is that he has a serious brain injury. And by “we” I mean his fans, our family and friends and yes my husband and me, at times. And by “serious brain injury” I mean he had a large part of his left frontal lobe removed. So when people have commented or reached out to me recently expressing how happy they are for us that there is no visible sign of tumor in Logan’s head, I may not respond as positively as most would think. People have said, “Aren’t you happy/excited/ecstatic?” and to be honest not really! Yes, I am glad to hear that there is no visible sign of tumor but that is minor compared to the big picture of the situation we are dealing with here. Our son was diagnosed with a congenital glioblastoma. He was born with cancer. This is just a small battle won in the long war we are fighting!

While I (we, my husband and I and our families) appreciate the thoughts and positive comments, this is not over! Logan is NOT in the clear and won’t be for a number of years. He was BORN with a brain tumor and is at risk for it to return. To kill the cancer he will have 5 aggressive inpatient rounds of chemo and to make sure it doesn’t return, he will have 8 outpatient rounds after that. He will be on chemo for almost two years….that’s A LOT OF POISON!!! Logan goes back to the hospital tomorrow night for his last round of aggressive inpatient chemo (about 3 weeks) then he will start his eight rounds of outpatient chemo a couple of weeks after that. Each of those rounds is 40 – 50 days, so his immune system will pretty much be permanently compromised for the next 14 months or so. This also means, we can’t send him to daycare, so I won’t be able to go back to work anytime soon. Thankfully we have a large support network and an amazing family that have offered to help so I can go back to work sooner than waiting for his chemo to be done.

The other positive is that Logan has been approved for Early Intervention through the county, so they are actually coming over tomorrow afternoon before we head back to the hospital to do his evaluation. I’m thrilled because we just found out that Whispering Pines will be doing his evaluation and I have heard amazing things about their programs and therapists! I’m also happy that most of Logan’s therapies can be done at home. I do some exercises and activities with him now on a daily basis, including practicing with a bottle and binky but having someone come in, evaluate and track his progress is very exciting!!!!

Yes, we have no doubt that Logan will beat and overcome cancer for good. However, not only are we dealing with chemotherapy for almost two years, we also have to deal with any deficiencies Logan may have due to the two major resections and the side effects of the chemo.

So as we prepare to go back to the hospital tomorrow please keep Logan in your prayers to not only kick cancer’s butt but to also overcome any deficiencies he may have.  We will continue to keep you all updated on Logan’s progress and any major happenings. Thank you all for your continued thoughts and prayers. We truly appreciate it!

We are ALL #LoganStrong!!!!

8 comments

Sherry and Jerry Brown

You are all in our prayers everyday and we will always be there for all of you when you need us, good luck!

Maria bortugno

I have no words, just AWE at your strength. Please take care of yourself. That will be the most difficult, especially knowing your baby is suffering and the uncertainty ahead. Know one can possibly understand your pain, fear or insecurities given the situation. You are a special human and Logan is blessed to have you as is the World. I shed tears while reading your blog. It is you, I weep for. God bless you Jennifer.

One step at a time momma. Yes, there is a whole scary road ahead of you once the cancer has been beaten. But take it from a ABI (acquired brain injury) mom, don’t try to picture that road ahead of you, or plan for it or try to be prepared for it because it will exhaust you and not be helpful to your little one. And there is a community out there once you reach that stage. Save your energy and thoughts for the battle you have directly in front of you anything else is just going to waste. Hugs And good luck on your journey, prayers always

Well said! Hang in their Fogg’s! Love you all.

-Talbot’s

Keeping all of you in my prayers. My granddaughter lives in Rotterdam and she is a 4 year survivor of stage 4 Hepatoblastoma (childhood liver cancer) which had metastasized to her lungs and her gall bladder. She was diagnosed at 17 months old, two months after I was diagnosed with stage 1 breast cancer. I know there are no guarantees with a cancer diagnosis but I do know that the love and prayers of so many can perform miracles. My granddaughter beat stage 4 cancer and although there were many expected side effects from the chemo, she has beaten all of the odds. There was a 60% chance of recurrence within the first two years which dropped to 2% afterward. There was a 100% chance that she would lose some or all of her hearing from one of her chemos and she lost none. She rebounded from her chemo treatments and surgeries both cognitively and physically at every turn….truly miraculous! Once our world righted and returned to its axis, my daughter changed careers and is now pursuing a nursing degree with the goal of becoming a pediatric oncology nurse at Albany Med. Good things can indeed come out of horrific experiences. I am certain that she follows Logan’s journey and would welcome reaching out to you if you wanted another mom to talk to. As for me, I would also like to extend a helping hand if there is anything I can help with. One thing I would like to do is suggest that one of our dress down days at my school benefit Logan Strong once school is back in session. My prayers are with you all.
Sincerely,
Cheryl Clark

Lorrie Hirsch

May God continue to give you and Logan and your family the strength you all need to keep on being strong and fight this unimaginable disease. Every blog I read, I cry and pray for all of you. Lorrie

This unthinkable disease has infected your entire family. Logan is going through the physical pain and you, your husband and family are suffering the mental pain. You are all so strong. Logan was fortunate to be born into your family. You are all warriors.

I look forward to your updates. I pray for him every morning. He sounds like he is doing wonderfully. You are doing a wonderful job helping him with the good times and the bad.
God Bless You All.

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